Kid`s Cancer Pages

Transcription

Kid`s Cancer Pages

‘
Kids’ Cancer
Pages
The Kid’s
Cancer Pages can
be downloaded
online at
www.JoyRx.org
3rd Edition
The National Resource Guide for
families and caregivers of
children and teens with cancer
When seriously ill children and their families need more than medicine, CCA’s innovative
programs create joy one moment at a time.
Founded more than a decade ago by a family who has been there, the Children’s
Cancer Association brings JoyRx to seriously ill children and their families, in the
hospital and at home.
CCA was established in loving memory of five-year-old Alexandra Ellis who
courageously fought cancer for two and a half years before she died on May 7,
1995. In the year of Alexandra’s death, CCA was born.
Alexandra’s family learned through experience that even the best medical care
cannot provide for the many non-medical needs of families with a seriously ill
child. They recognized that there were many gaps in support for families and kids
facing life-threatening illnesses. With the help of wonderful community leaders
and volunteers, Regina and Cliff Ellis created the Children’s Cancer Association to
be a compassionate resource and provide for critical unmet needs.
At CCA, every day brings new requests from families in need. CCA receives no
federal or state funds. Please help us reach even more families by contributing
today by going to www.JoyRx.org.
Alexandra Ellis (1989 - 1995), Photographed in 1993
Fighting cancer is one of the hardest battles that
you and your child will ever encounter. Those of
us who have faced similar battles understand how
much support you and your child need right now.
Regina Ellis, CEO & Founder of CCA
and Alexandra’s sister Kate
and brother Zach (2008)
Our Kids’ Cancer Pages directory is the most
comprehensive national resource guide of its kind.
It provides hundreds of listings that will help you
make decisions about medical treatments and pain
management, find information about financial aid
and healthcare assistance, as well as resources that
can help bring peace and guidance to your child
and family. Simply put, these pages are a place to
start and a guide for the road ahead.
We continually update and expand these pages. Please send us your feedback or pass along other
resources you find by emailing [email protected]
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Music Rx®
With over a decade of experience in
bringing the healing power of music to
hospitalized children, to their families,
and to the medical professionals who
care for them, the Music Rx® program
supports hospitals in relieving fear,
anxiety, and pain by bringing joy to
young hearts. Music Rx features stateof-the-art mobile music carts loaded
with instruments, iPods, karaoke and
a recording studio. Music therapists,
specialists, and volunteers provide
tailored musical experiences at bedsides
and in hallways, from oncology and
the burn unit to intensive care and
rehabilitation.
Chemo Pal®
CCA trains and matches trusted adults
with children and teens who are
undergoing chemotherapy, introducing
fun and friendship into a painful and
isolating treatment process. Supplied
with toys, games, and crafts, CCA’s
Chemo Pals brighten the day for their
special friend and offer parents and
family members a trusted source of
compassion and support.
LifeSupport
Family Enrichment Program
The bi-lingual LifeSupport Family
Enrichment Program brings hope,
joy and understanding during an
overwhelming and financially depleting
journey. LifeSupport helps Oregon and
SW Washington families with specific
essential needs, provides direct links
to hundreds of local and national
resources, offers funeral assistance and
bereavement support and responds with
yes when a child’s special wish is not met
by other organizations.
Caring Cabin™
The only family retreat home in the
Western United States is CCA’s Alexandra
Ellis Caring Cabin, a one-of-a-kind oasis
on the Oregon Coast where families can
get away, at no cost, to build precious
memories together. Located on 24
secluded acres with a private lake, and
coastal access just a quarter of a mile
away, the Caring Cabin is a wonderland
for children and teens with cancer and
terminal illnesses in Oregon, and a
welcome respite for family members of
all ages.
Alexandra Ellis
Family Resource Center
A Resource Center at Portland’s Legacy
Emanuel Children’s Hospital is a
comprehensive, staffed library that helps
families find information, make decisions
and cope with their child’s treatment,
hospitalization and continued care.
Books and online computers provide
access to the latest information on
pediatric diseases, illnesses and injuries.
Presentations and Outreach
The Children’s Cancer Association
speaks from experience to share families’
needs and concerns, strategies for
successful collaboration and ideas for
compassionate care for seriously ill
children. CCA staff members are also
involved in various hospital committees
advocating for Family Centered Care.
The Children’s Cancer Association: Programs & Resources
In addition to this directory, CCA’s award-winning programs and resources
reach out from Portland across the nation into hospitals and homes, providing
innovative services not found anywhere else in the US and offered at no cost.
| v
National Funding Partner
The Kid’s Cancer Pages have been made possible in part by a generous grant from Genentech
Corporation. Everything Genentech does is motivated by a desire to make a difference in the
lives of patients with serious and life-threatening diseases. They sincerely believe in the power
of knowledge and improving the quality of life for children with cancer, their families and the
medical professionals who care for them. To find out more, go to www.genentech.com
Contributors
Gleaming Heart in the CCA Logo was created by Alexandra Ellis, age 5 - May 1995
Editor: Regina Ellis
Creative Director & Layout: Leslie Palmer
Additional Layout: redbat design
Research & Copy Contributors: Nicole McDonald, Jerry Korman
Medical Edits: Cherie Weintraub
Photography: Joni Kabana, www.jonikabana.com
In-Kind Donation of Cover & Template Design: Zoom Creates, www.zoomcreates.com
© 2009 The Children’s Cancer Association
All rights reserved. No portion of this publication may be reproduced, stored or transmitted in any form or by any means—
electronically, mechanically, or by photocopy or recording—without prior written permission from the Children’s Cancer
Association. It is our policy to not share any photos with Third Parties. All photos in this publication are solely the property
of The Children’s Cancer Association. They are not to be used for any reason and doing so violates federal patient privacy
and copyright laws.
When this directory was published, all resources were derived from the most current and authoritative national sources
known to the author. If we inadvertently missed an organization or resource and/or an organization has changed contact
information, please email [email protected].
The Children’s Cancer Association (including its boards, employees, supporters, sponsors, foundation partners, or
affiliates) does not recommend, endorse, or support any directory resource listing or the materials, information, advice or
recommendations they provide to the public. The resources listed in this directory and the recommendations or materials
presented by the respective organizations should not be regarded as a substitute for professional medical and/or legal
counsel. Any reader of this publication seeking medical advice or expert interpretation is urged to consult with a physician,
medical professional, attorney or other professional who is well-versed in the matter of concern. The sole responsibility to
discern quality, value, validity, expertise, and/or the appropriateness of the information provided is up to the reader.
vi |
Table of Contents
Where to Begin Your Search............ 1
Information & Resources................... 5
Disease-Specific Resources..............................6
Bone.............................................................6
Brain.............................................................7
Breast...........................................................9
Endocrine.................................................... 10
Leukemia & Lymphoma.............................. 11
Liver............................................................. 12
Lung............................................................ 13
Nervous System......................................... 13
Ocular......................................................... 14
Oral, Head, Neck....................................... 15
Skin............................................................. 15
Soft Tissue Sarcoma................................... 16
Urogenital................................................... 16
Rare Pediatric Conditions.......................... 17
Syndromes & Conditions........................... 18
Support & Counseling.................................... 20
Pain Management..........................................27
Disability.......................................................... 30
Federal & State Agencies......................... 30
Other Disability Agencies.......................... 30
Transplant & Donor Programs....................... 35
Home Care..................................................... 38
Reference & Accreditation............................. 40
Complementary & Alternative Medicine....... 42
Intercultural Resources................................... 45
Resources with this symbol
are available in Spanish
Aid & Assistance.......................................... 47
Financial Assistance....................................... 48
Emergency & Temporary Cash...................... 54
Fundraising..................................................... 55
Employment & Legal Assistance................... 56
Insurance & Medical Assistance....................57
Prescription Assistance ................................. 59
Organizations............................................ 59
Pharmaceutical Aid................................... 60
Reimbursements....................................... 60
Infusion Pumps ......................................... 61
Travel & Lodging Assistance.......................... 62
Air Travel.................................................... 62
Ground Transportation............................. 64
Lodging...................................................... 65
Educational Financial Aid............................... 66
Teen & Family Resources...................... 69
Wish Fulfillement Organizations.....................70
Books, DVDs, Games, Websites.....................74
Books..........................................................74
Books Specifically for Teens (13+)..............79
Books For Siblings / Families.....................79
DVDs / Videos / Games / Web................ 80
Camps & Vacation Retreats........................... 84
Community Forums & Friends....................... 86
Child / Teen
Support Forums . ...................................... 86
Sibling Support Forums............................. 90
Parent Support Forums.............................. 91
Odds & Ends................................................... 92
Life After Cancer............................................. 95
End of Life Support.................................. 101
Compassionate Care Resources.................. 102
Grief & Bereavement..................................... 105
Funeral & Memorial Services.........................110
Notes:
viii |
Where to Begin Your Search
Facing a diagnosis of pediatric cancer families
can be overwhelmed by fear, confusion,
questions, grief, and hope. This section offers
national clearinghouses that provide
comprehensive information and additional
links related to your child’s cancer, treatment
protocols, support, and education. These may
be good places to begin your journey.
Where to Begin Your Search | 1
These national clearing houses offer links and resources and are
excellent places to begin your search.
American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329, GA 30329
PHONE: 800-227-2345
FAX: 404-325-2217
EMAIL: [email protected]
WEB: www.cancer.org
A nationwide, community-based,
voluntary health organization that
assists people with cancer through
research, education, advocacy, and
service. The information line can help:
answer questions by telephone and offer
free publications regarding diagnosis,
treatment, and nutrition; provide
information and counseling for the cancer
patient and the patient’s family; provide
information and guidance concerning
services, community health services,
and other resources, such as providing
transportation to and from a doctor’s
office, clinic, or hospital for treatment;
arrange for lodging (see Lodging); help
with home health care, blood programs,
assistance with employment problems
and social work assistance.
National Cancer Institute
6116 Executive Boulevard
Room 3036A
Bethesda, MD 20892
PHONE: 800-422-6237
WEB: www.cancer.gov
General Information, cancer topics,
Disease-specific information, clinical trials,
Lists of treatment centers by state and
more. These 4 specific areas may be most
helpful:
1. List by State of Cancer
Treatment Centers of
Excellence
WEB: cancercenters.cancer.gov/cancer
centers/cancer-centers-list.html
List with contact info and direct links
to cancer treatment centers in the US.
Detailed profiles and maps.
2. Search Specific
Cancer Types
WEB: www.cancer.gov/cancertopics
In-depth information for the patient
and clinician on types of cancers,
treatment, clinical trials, coping with
cancer, support resources, etc. Find
specific types from lists or searches.
3. Clinical Trials
“In a dark time, the eye
begins to see.”
— Theodore Roethke
WEB: cancer.gov/clinicaltrials
Comprehensive clinical trials
information center for patients,
health professionals, and the public.
Information on understanding trials,
deciding whether to participate in
trials, finding specific trials, research
news and other resources.
4.
Center for
Cancer Research
Pediatric Oncology Branch,
National Institutes of Health
PHONE: 800-422-6237
FAX: 301-402-0575
EMAIL: [email protected],
WEB: home.ccr.cancer.gov/oncology/
pediatric
Provides patient care, patient
treatment, and education to the
community, and helps NCI successfully
achieve its goal of reducing the
burden of cancer.
2 | Where to Begin Your Search
WEB: kidshealth.org/
parent/medical/index.html
General and disease-specific
cancer information.
MedlinePlus.gov
WEB: www.nlm.nih.gov/medlineplus/
cancerinchildren.html
From the National Institutes of Health and
the National Library of Medicine. Many
authoritative links on treatments, coping,
nutrition, and organizations and more.
National Library of Medicine
Guide to Finding Health Information
8600 Rockville Pike
Bethesda, MD 20894
PHONE: 888-346-3656
WEB: www.nlm.nih.gov/services/guide
Many links, tips and resources to help you
identify reputable organizations, find reliable
health information, and evaluate websites.
KidsHealth.org
National Organization
for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
PHONE: 800-999-6673
WEB: www.rarediseases.org
Provides current information on rare diseases,
including numerous forms of pediatric cancer
and a comprehensive listing of links that offer
information and assistance.
New York Online Access to Heath
(Ask Noah about Cancer)
WEB: www.noah-health.org/en/cancer/types/
childhood
Updated authoritative website maintained
by New York public libraries, universities, and
health organizations. Information on care
and treatment, living with cancer, and links to
specific cancer types.
Oncolink
University of Pennsylvania
WEB: www.oncolink.upenn.edu/specialty/pain
Helps cancer patients, families, health care
professionals and the general public get
accurate cancer-related information at no
charge. Has comprehensive information about
specific types of cancer, updates on cancer
treatments and news about research advances.
Where to Begin Your Search | 3
Notes:
4 |
Your child’s cancer diagnosis and treatment impacts
everyone in your family. You look for support, learn to
advocate, strive to understand the treatments and their
effects, recognize the needs of your ill child and his/her
siblings, all while struggling with your feelings
of helplessness. This section lists hundreds of
organizations and websites that provide information and
resources for families of children with cancer or other
life-threatening illnesses.
Medical Information & Resources
Information & Resources
Information & Resources | 5
Disease-Specific Resources
Alphabetical listing of resources offering services for specific types of
pediatric cancer.
Bone
Ewing’s sarcoma, osteosarcoma,
peripheral primitive
neuroectodermal tumors.
Bone Cancer:
MedlinePlus.gov
WEB: www.nlmnih.gov/medlineplus/
bonecancer.html
Many links on Bone Cancers.
Preformulated searches are included
and give easy access to medical journal
articles. Also has extensive information
about drugs, an illustrated medical
encyclopedia, interactive patient
tutorials, the latest health news, and
information on clinical trials.
Ewing’s Sarcoma: NOAH
New York Online Access to Health
WEB: www.noahhealth.org/en/cancer/
types/childhood/
types/sarcoma.html
Authoritative links
to Ewing’s Sarcoma
information. See
detailed info for
NOAH in the Where to
Begin section.
Ewing’s Sarcoma:
CureSearch.org
PHONE:
800-458-6223
EMAIL: info@
curesearch.org
WEB: www.
curesearch.org
Unites the Children’s
Oncology Group,
and the National
Childhood Cancer
Foundation through
the mission to
cure childhood
cancer. Information
and on stages,
treatment. Features a
downloadable Family
Handbook .
6 | Information & Resources
Ewing’s Sarcoma: Kids Health
WEB: www.kidshealth.org/parent/
medical/cancer/ewings.html
Information and links to other articles
about Ewing’s Sarcoma.
The Ewing’s Sarcoma and
Pediatric Cancer
PHONE: 310-355-6046
WEB: www.cureourchildren.org
Site maintained by family of a childhood
Ewing’s survivor. Contains many links to
information on treatment, clinical trials,
and support organizations.
Osteosarcoma: NOAH
New York Online Access to Health
WEB: www.noah-health.org/en/cancer/
types/childhood/types/osteosarcoma
Authoritative links to Osteosarcoma
information.
Osteosarcoma: CureSearch.org
PHONE: 800-458-6223
WEB: www.curesearch.org
Unites the world’s largest childhood
cancer research organization, the
Children’s Oncology Group, and the
National Childhood Cancer Foundation
through our mission to cure childhood
cancer. Research is the key to the cure.
Offers information and support on
stages, treatment, etc. Also features a
downloadable Family Handbook to help
guide families through treatment.
Osteosarcoma: Kids Health
medical/cancer/cancer_osteosarcoma
Information on Osteosarcoma, and links
to other articles about Osteosarcoma.
Osteosarcoma Online
WEB: www.iucc.iu.edu/osteosarcoma/
Facts, information on the Osteosarcoma
Clinical Care & Research Program, and
ways to support teens and young adults
facing the disease.
American Brain Tumor
Association
2720 River Road, Suite 146
Des Plaines, IL 60018
PHONE: 800-886-2282
FAX: 847-827-9918
WEB: www.abta.org
Free services including publications
about brain tumors, support group
lists, referral information, a pen-pal
program, and research support.
Brain Trust
186 Hampshire St
Cambridge, MA 02139-1320
PHONE: 617-876-2002
FAX: 617-876-2332
WEB: www.braintrust.org
Information and support about brain
tumors and related conditions.
Brain Tumor Foundation
for Children, Inc.
1835 Savoy Drive
Atlanta, GA 30341
PHONE: 770-458-5554
WEB: www.braintumorkids.org
Information and emotional support
for families of children with brain
tumors. Promotes public education,
awareness, raises funds to support
research and quality of life.
620 Colborne St., Suite 301
London, Ontario, Canada N6B3R9
PHONE: 800-265-5106
WEB: www.braintumour.ca
Overview of the brain and how it
functions, facts about brain tumors,
descriptions of many types of
tumors and cysts, an overview of
current treatments, what to expect
at the hospital and at home, glossary
of terms.
Childhood Brain
Tumor Foundation
20312 Watkins Meadow Dr
Germantown, MD 20876
PHONE: 301-515-2900
WEB: www.childhoodbraintumor.org
Founded by families, friends, and
physicians of children with brain
tumors. Provides funding for scientific
research and public awareness. Works
to improve prognosis and quality of
life. Links to information and resources
relating to brain tumors.
Childhood Brain Tumors:
Medlineplus.gov
childhoodbraintumors.html
From the National Institutes of
Health and National Library of
Medicine, many authoritative links
to information, organizations,
treatments, etc. on childhood brain
tumors.
Carrying you along.
Brainstem glioma,
craniopharyngioma, cerebellar
astrocytoma, cerebellar,
dermoid tumors, ependymoma,
hemangioblastoma, high
grade glioma, infratentorial
ependymoma, intracranial
germ cell tumor, lipomas,
low grade glioma including
hypothalamic and optic nerve
gliomas, medulloblastoma,
metastatic meduloblastoma,
pineoblastoma, spinal cord
tumors, supratentorial primitive
neuroectodermal tumors,
Ganglioneuroblastoma,
neuroblastoma, neurofibroma,
peripheral nerve sheath tumors.
of Canada
Disease-Specific
Brain
Children’s
274 Madison Avenue, Suite 1301
New York, NY 10016
PHONE: 212-448-9494
WEB: www.cbtf.org/
A nonprofit organization that funds
basic research on pediatric brain
tumors. Offers a monthly support
group and referral to available
resources. A comprehensive guide for
parents of children with brain
and spinal cord tumors is available,
as well as a newsletter and brochure.
Dana-Farber
Cancer Institute
Children’s Hospital Boston
44 Binney Street, 3rd Floor
Boston, MA 02115
PHONE: 617-632-2680
WEB: www.dana-farber.org/can/cancer
Information on the different types of
brain cancer.
Florida Brain Tumor Association
It is much more
important to know
what sort of patient
has the disease than
what sort of disease
the patient has.
-Sir William Osler, MD,
P.O. Box 770182
Coral Springs, Florida 33077-0182
PHONE: 954-755-4307
WEB: www.fbta.info
Resources, support groups, and
emotional support to ease families
through the initial shock of diagnosis.
Lash and Associates
Publishing/Training
708 Young Forest Drive
Wake Forest, NC 27587
PHONE: 919-562-0015
WEB: www.lapublishing.com
Primary focus is the neurological,
psychological, communicative,
psychosocial and educational impact
of brain injuries among children, youth
and young adults. Provide practical,
informative, and affordable materials
for families, survivors, health care
professionals, rehabilitation specialists,
educators and community
staff.
Meningioma
Mommas
137 W. County Line
Road #320
Littleton, CO 80129
EMAIL: info@
meningiomamommas.
org
WEB: www.
meningiomamommas.
org
Online support group
for those affected by
meningioma brain
tumors. The site
includes resource
links, discussion
board, events, humor,
inspiration, and
merchandise.
Musella Foundation
1100 Peninsula Blvd,
Hewlett, NY 11557
PHONE: 516-295-4740
WEB: www.virtualtrials.com
Basic information on tumors, questions
and answers, finding treatments, news,
virtual trials, videos, chat, newsletter,
brain tumor centers, survivor stories, and
trials matcher. Information is reviewed by
a medical advisory board before posted.
National Brain Tumor
Foundation
414 13th Street, Suite 700
Oakland, CA 94612
PHONE: 510-839-9777
WEB: www.braintumor.org
Support and education for brain tumor
patients and their families.
National Institute of
Neurological Disorders
and Stroke
P.O. Box 5801
Bethesda, MD 20824
PHONE: 800-352-9424
TTY: 301-468-5981
WEB: www.ninds.nih.gov/
disorders/brainandspinaltumors/
brainandspinaltumors.htm
Supports and conducts research on the
healthy and diseased brain, spinal cord,
and peripheral nerves. Website provides
information, articles, news, and funding
for research.
Pediatric
302 Ridgefield Ct
Asheville, SC 28806
PHONE: 800-253-6530
FAX: 828-665-6894
EMAIL: [email protected]/
[email protected]
WEB: www.pbtfus.org
Researches causes and treatments
for childhood brain tumors; supports
national database on primary brain
tumors and increasing public awareness.
Provides educational and emotional
support for children and families.
Pituitary Network Association
P.O. Box 1958
Thousand Oaks, CA 91358
PHONE: 805 499-9973
FAX: 805 480-0633
WEB: www.pituitary.org
Devoted to the treatment and cure of
pituitary disorders by providing public
awareness programs and educational
seminars, interactive websites and
referral programs.
PO Box 422471
Atlanta, GA 30342
WEB: www.sbtf.org
Information, education, and support
services for brain tumor patients and
their families, and links to additional
brain tumor organizations.
Tumor Free
WEB: www.tumorfree.com
Resources for both patients and
caregivers beginning at diagnosis and
throughout the entire brain tumor
battle.
Breast
breastcancer.html
Links to information on breast cancer
diagnosis, treatment, organizations,
support, and more.
Breast Cancer:
NOAH
NY Online Access to Health
types/breast/index.html
Information on breast cancer
support and more.
Mothers Supporting
Daughters with Breast Cancer
21710 Bayshore Rd
Chestertown, MD 21620
PHONE: 410-778-1982
FAX: 410-778-1411
WEB: www.mothersdaughters.org
Support to mothers and their
daughters through phone calls, letters,
and informational booklets.
5005 LBJ Freeway, Suite 250
Dallas, TX 75244
PHONE: 972-855-1600
WEB: www.komen.org
Provides support and education
to patients and families.
Breastcancer.org
WEB: www.breastcancer.org/
Information on breast cancer
diagnosis, treatment, living day-to
day, and risk factors. Also includes
“Ask-The-Expert” online forums, online
discussion boards and chat rooms.
Y-Me Breast Cancer
Support Program
212 W. Van Buren, Suite 1000
Homewood, IL 60430
PHONE: 312-799-8228
FAX: 312-294-8597
WEB: www.y-me.org
Provides support and counseling
through its telephone hotline.
Publishes a newsletter.
National
Lymphedema Network
Latham Square
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612-2138
PHONE: 800-541-3259
WEB: www.lymphnet.org/
Provides education, management
and prevention information to
lymphedema patients and the general
public. Topics include: referrals to
lymphedema treatment centers, health
care professionals, support groups,
a quarterly newsletter, pen-pals,
updated resource guide and more, a
biennial Patient Summit for patients
and family, and an extensive computer
database.
Carrying you along.
Breast Cancer:
Medlineplus.gov
Susan G. Komen
Breast Cancer Foundation
Disease-Specific
Southeastern Brain Tumor
Foundation
National
Breast Cancer Coalition
1101 17th Street NW, Suite 1300
Washington, DC 20036
PHONE: 800-622-2838
FAX: 202-265-6854
WEB: www.stopbreastcancer.org
Dedicated to the eradication of breast
cancer by action, policy, and advocacy.
Endocrine
Adrenal adenoma, carcinoma,
ovarian cancer, pancreatic
cancer, pheochromocytoma,
testicular cancer, adenoma,
thymus cancer, thyroid
carcinoma.
Endocrine Cancers:
MedlinePlus.gov
WEB: www.vsearch.nlm.nih.gov/
vivisimo
Links to pages on various types of
endocrine cancers. Click on the
specific links to view resources
on diagnosis, treatment, support
organizations and more.
Endocrine Society
8401 Connecticut Avenue, Suite 900
Chevy Chase MD 20815-5817
PHONE: 301-941-0200
FAX: 301-941-0259
WEB: www.endo-society.org
Website offers information about
endocrine, physician referral, clinical
trials network, links to other sites, and
international resources and articles.
Carcinoid Cancer Foundation
333 Mamaroneck Avenue # 492
White Plains, NY 10605
PHONE: 888-722-3132
WEB: www.carcinoid.org/
General information for the public:
answers to frequently asked questions,
links on topics such as nutrition,
carcinoid specialists, support and
discussion groups, personal web
pages, international connections,
medical sites, travel, lodging,
newsletters and events.
Hirshberg Foundation for
Pancreatic Cancer Research
375 Homewood Road
Los Angeles CA 90049
PHONE: 310-472-6310
WEB: www.pancreatic.org
Information, support, reference source,
clinical trials, and research.
Lustgarten Foundation for
Pancreatic Cancer Research
1111 Stewart Avenue
Bethpage, NY 11714
PHONE: 866-789-1000
WEB: www.lustgartenfoundation.org
Information and support for pancreatic
cancer patients, their families
and friends, including additional
resource links.
Ovarian Cancer:
Medlineplus.gov
WEB: www.nlm.nih.gov/
medlineplus/ovariancancer.
html
From the National Institutes
of Health and National
Library of Medicine.
Authoritative links to disease
information, diagnosis,
treatment, prevention,
support organizations.
Pancreatic Cancer
Action Network
2221 Rosecrans Ave.,
Suite 131
El Segundo, CA 90245
PHONE: 877-272-6226
WEB: www.pancan.org
General information and
support to caregivers and
patients. Extensive patient
information and guidance
are available.
5 Harris Court
Building N, Suite 3
Monterey CA 93940
PHONE: 831-658-0600
WEB: www.pancreatica.org
Worldwide focal and gathering point
on the internet for the latest news and
information about clinical trials and
medical treatments. Presents impartial
knowledge where large amounts of
information can be searched to help
optimize personal treatment strategies.
Testicular Cancer:
MedlinePlus.gov
Thymus Cancer:
MedlinePlus.gov
thymuscancer.html
From the National Institutes of Health
& National Library of Medicine, many
authoritative links to information on
thymus cancer diagnosis, treatment,
organizations and support.
Leukemia &
Lymphoma
Acute lymphoblastic, acute
lymphocytic, acute myeloid
(including acute monocytic and
promyelocytic), chronic myeloid,
Hodgkin’s, MDS, Non-Hodgkin’s
(including Burkitt’s and large cell),
hairy cell leukemia.
Childhood Leukemia and
Lymphoma: MedlinePlus.gov
leukemiachildhood.htm
lymphoma.html
links to specific diseases, treatment,
coping, news, support organizations,
and more.
585 Stewart Ave, Suite 18
Garden City, NY 11530
PHONE: 516-222-1944
WEB: www.childrensleukemia.org
Patient aid program to help pay for
leukemia medication not covered by
insurance. Also funds several research
grants. Intergroup Acute Myelocytic
Leukemia Study.
Cure Hodgkins.com
P.O. Box 3066, Fullerton, CA 92834
WEB: www.curehodgkins.com
Online magazine that connects Hodgkin’s
disease patients and their families
with the most up to date and relevant
information on the Internet. The site
contains resources and information,
stories of hope and survival, and articles
that highlight recent news about
Hodgkin’s survivors.
International
Myeloma Foundation
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
PHONE: 800-452-2873
WEB: www.myeloma.org/myeloma
Provides up-to-date and in-depth
information about multiple myeloma
including research and treatment
advances, as well as information
about the IMF, upcoming events and
research, education, support and
advocacy programs.
Carrying you along.
testicularcancer.html
and National Library of Medicine.
Authoritative links to disease information,
diagnosis, treatment, prevention, support
organizations, etc. Scroll down to bottom
of page for section on children.
Children’s Leukemia
Research Association
Information
& Resources
Disease-Specific
Pancreatica
Leukemia and Lymphoma
Society of America
1311 Mamaroneck Ave.
PHONE: 800-955-4572
WEB: www.leukemia.org
Family support group programs, referrals
to local sources of help, education, patient
aid, and research funding. Focuses on
leukemia, lymphomas, myeloma, and
Hodgkin’s disease. Financial assistance
for drugs used in care, treatment, and/
or control of disease: transfusing blood;
transportation to and from a doctor’s
office, hospital, or treatment center;
and x-ray treatment.
Leukemia Research Foundation
820 Davis Street, Suite 420
Evanston, IL 60201
PHONE: 847-424-0600
WEB: www.leukemia-research.org
Brings parents together worldwide to
share experiences on caring for children
who have leukemia. Offers educational
resources, emotional support, and
financial assistance.
Lymphoma Research
Foundation
8800 Venice Boulevard, Suite 207
Los Angeles, CA 90034
PHONE: 310-204-7040, 800-500-9976
FAX: 310-204-7043
WEB: www.lymphoma.org
Educational information for patients.
Website contains information on
what’s new, general information
on lymphoma, support group
listings, clinical trial information, and
connections to others with lymphoma
through a program called “Cell Mates.”
Multiple Myeloma Research
Foundation
51 Locust Avenue, Suite 201
New Canaan, CT 06840
PHONE: 203-972-1250
WEB: www.multiplemyeloma.org
Information about Myeloma, clinical
trials, research, advocacy, links to other
resources and events.
National Children’s
Leukemia Foundation
172 Madison Avenue
New York, NY 10016
PHONE: 212-686-2722
WEB: www.leukemiafoundation.org
Services, support, and referrals to
leukemia patients and their families.
Primary goal is to ensure access to
state-of-the-art treatment for every
leukemia patient regardless of ability
to pay. The organization has a program,
“Make a Dream Come True,” which
grants wishes to young leukemia
patients. See “Wishing Organizations.”
Liver
Hepatoblastoma,
hepatocellular carcinoma,
postcirrhotic hepatoma.
American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038
PHONE: 800-465-4837
WEB: liverfoundation.org
Information, resources, and relevant
links for cancer of the liver.
Children’s Liver Association for
Support Services
27023 McBean Parkway #126
Valencia, CA 91355
PHONE: 877-679-8256
WEB: www.classkids.org
Information about pediatric liver
disease, a newsletter, resource links,
medical articles, and a parent matching
system that links families for friendship
and support.
Liver Cancers in Children:
CureSearch.org
WEB: www.curesearch.org/for_
parents_and_families/newlydiagnosed
Article about liver cancer in children,
treatment, after treatment. Also has
information about ways friends,
community members and teachers
administrators can help support
patients and families.
livercancer.html
and National Library of Medicine,
many authoritative links on liver cancer
diagnosis, treatment, coping, news, and
support and advocacy organizations.
Includes a section on Childhood liver
cancers.
Liver Cancer in Children: NOAH
types/childhood/types/Liver.html
Links to authoritative information on
childhood liver cancer.
Liver Diseases in Children
Univ. of Wisconsin
Family Village
Lung
Non-small cell lung cancer,
small cell lung cancer.
American Lung Association
61 Broadway, 6th Floor
New York, NY 10006
PHONE: 800-586-4872
WEB: www.lungusa.org
Free publications to help conquer lung
disease and promote lung health.
Lung Cancer:
MedlinePlus.gov
lungcancer.html
Llinks to authoritative lung cancer
information including diagnosis,
treatment, coping, and support
organizations .
Lung Cancer: NOAH
types/lung
Links to information on lung cancer
support and more.
Ganglioneuroblastoma,
neuroblastoma, neurofibroma,
peripheral nerve sheath tumor.
Children’s Neuroblastoma
Cancer Foundation
P.O. Box 6635
Bloomingdale, IL 60108
PHONE: 866-671-2623
FAX: 630-351-2462
WEB: www.nbhope.org/
Information to educate the public and
pediatricians concerning such cancers, a
forum for patients and family members,
and information on treatment, palliative
care, hospice services, bereavement
groups and emotional support.
Neuroblastoma:
Medlineplus.gov
neuroblastoma.html
Llinks on neuroblastoma. Includes
overviews, diagnosis, treatment, financial
issues, and support organizations.
National
Neurofibromatosis Foundation
95 Pine Street, 16th Floor
New York, NY 10005
PHONE: 800-323-7938
WEB: www.nf.org
Support services for patients and
families, such as support group activities
and referrals to qualified physicians and
healthcare professionals. Topics include:
what is NF, finding a doctor, research,
clinical trials, and activities by state,
youth programs, publications, bulletin
board, chat room, additional resources,
and products.
Carrying you along.
WEB:
www.familyvillage.wisc.edu/lib_liver.htm
Authoritative links to information on liver
disease in children. Provides information
on who to contact, where to go to chat
with others, links to overviews and
helpful websites.
Nervous System
Disease-Specific
Liver Cancer:
MedlinePlus.gov
Neuroblastoma:
Children’s Cancer Society
PO Box 957672
Hoffman Estates, IL 60195
PHONE: 800-532-5162
WEB: www.neuroblastomacancer.org
Dedicated to fund-raising, support,
research, and advocacy for children
with neuroblastoma and their families.
Members are mainly parents or relatives of
children diagnosed with neuroblastoma.
Parent-to-parent information network
online and a newsletter are available.
Neuroblastoma Society (UK)
WEB: www.nsoc.co.uk
Offers parental support to families of
children with neuroblastoma. Website
includes downloadable booklet for
parents and a newsletter.
Peripheral Nerve
Sheath Tumor:
CureSearch.org
The best and most
beautiful things in
the world cannot
be seen or even
touched.
They must be felt
with the heart.
-Helen Keller
4600 East West Highway, Suite 600
Bethesda, MD 20814-3457
PHONE: 800-458-6223
WEB: www.curesearch.org/
Information and support on
stages, and treatment. Features a
downloadable Family Handbook to
help guide families through treatment.
Ocular
Retinoblastoma, Choroidal
Hemangioma, Choroidal
Melanoma, Choroidal
Metastasis, Choroidal
Nevus, Conjunctival Tumors,
Eyelid Tumors, Iris Tumors,
Melanocytoma, Orbital
Tumors.
Eye Cancer Network
115 East 61st Street
New York, NY 10021
PHONE: 212-832-8170
WEB: www.eyecancer.com
Information about the diagnosis and
treatment of ocular tumors, eye cancer,
and orbital diseases for patients, their
families, and the health professionals
who care for them.
Eye Cancers:
MedlinePlus.gov
eyecancer.html
and the National Library of Medicine,
many authoritative links on eye
cancers, diagnosis, treatment, and
support organizations.
Eye Cancers: NOAH
types/eye.html
Links to sources of information on
types of eye cancer.
Rhetinoblastoma
Family Village,
Univ. of Wisconsin
WEB: www.familyvillage.wisc.edu/
lib_reti.htm
Links to information on
Rhetinoblastoma, support
organizations, where to go to chat with
others.
National Retinoblastoma
Research and Support
Foundation
Bascom Palmer Eye Institute
University of Miami School of Medicine
Ocular Oncology Service
900 Northwest 17th Street
Miami, FL 33136
PHONE: 800-329-7000
WEB: www.eyecancermd.org
Local support groups organized
by parents and friends of children
with retinoblastoma. Organization
disseminates knowledge and
assurance to families dealing with the
emotional pain and anxieties related
to having a child diagnosed with
retinoblastoma.
4650 Sunset Boulevard MS #88
PHONE: 323-669-2299
FAX: 323-660-8541
WEB: www.retinoblastoma.net
Information, answers to frequently asked
questions, children’s stories, and a resource
to find doctors.
Oral, Head, Neck
Nasopharyngeal carcinoma,
esthesioneuroblastoma,
thyroid tumors.
AboutFace
123 Edward St. Suite 1003
Toronto, ON Canada M5G 1E2
PHONE: 416-597-2229
WEB: www.aboutfaceusa.org/
Supporting individuals touched by
facial difference with peer connections,
information, emotional support and
opportunities to enhance their life
circumstances.
American Head & Neck Society
AHNS, 11300 W. Olympic Blvd, Suite 600,
PHONE: 310-437-0559
WEB: www.ahns.info
Information on meeting and events,
clinical resources, research, database, and
patient education. Promotes and advances
the knowledge of prevention, diagnosis,
treatment, and rehabilitation of neoplasms
and other diseases of the head and neck.
Head and Neck Cancer:
Medlineplus.gov
headandneckcancer.html
and National Library of Medicine, many
authoritative links on Head and Neck
cancers, treatments, diagnoses, support
organizations, latest news, videos, and
clinical trials.
Let’s Face It
PO Box 29972, Bellingham, WA 98228
PHONE: 360-676-7325
WEB: www.faceit.org
Information and support organization
for people with facial difference and
their families. Provides mutual support,
educational services, and an annual
resource listing with biannual updates for
individuals who are facially disfigured.
Head and Neck Cancer Alliance
135 Rutledge Ave.
Charleston, SC, 29425
PHONE: 843.792.6624
WEB: www.headandneck.org
Provides support to cancer patients,
education to children and adults in the
disease process, treatment, and prevention
of head and neck cancer, and supports
ongoing research.
Support for People with Oral,
Head and Neck Cancer
PO Box 53, Locust Valley, NY 11560
PHONE: 800-377-0928
WEB: www.spohnc.org
Information on cancers affecting the
mouth, head, and neck. Addresses the
broad emotional, physical, and humanistic
needs of these patients. Links to similar
resources found helpful to these patients.
Skin
Melanoma, lipoma, squamous
and basal cell carcinomas.
American Academy of
Dermatology
P.O. Box 4014
Schaumburg, IL 60168-4014
PHONE: 847-330-0230
FAX: 847-330-0050
WEB: www.aad.org
Resource to find a dermatologist, learn
about skin cancer, including a page for
kids, chat rooms, and home pages.
Disease
Information
-Specific
& Resources
Resources
Carrying you along.
Disease-Specific
Retinoblastoma
International
Skin Cancer and Melanoma:
MedlinePlus.gov
skincancer.html
melanoma.html
Links to overviews, latest news, diagnosis,
treatment, support organizations, and
clinical trials.
Skin Cancer: NOAH
types/skin.html
Links to Melanoma and Skin Cancer
information and organizations.
Soft Tissue
Sarcoma
Rhabdomyosarcoma, Nonrhabdomyosarcoma soft
tissue sarcomas including
fibrosarcoma, synovial
sarcoma, leiomyosarcoma,
desmord tumor, liposarcoma,
synovial sarcoma.
Northwest Sarcoma
Foundation
The only courage
that matters is the
kind that gets you
from one moment to
the next.
-Mignon McLaughlin
4531 52nd Avenue NE
Seattle, WA 98105
PHONE: 206-228-5535
WEB: www.nwsarcoma.org
Support and education for those who
are living with a sarcoma and other
rare bone tumor diseases. It provides a
basic or general overview of sarcoma
diseases and then points you to more
comprehensive resources. Resources
and leading expert information from
around the world is also provided.
Sarcoma Alliance
775 East Blithedale, #334
Mill Valley, CA 94941
PHONE: 415-381-7236
WEB: www.sarcomaalliance.org
Guidance, education and support to
patients and families. Information
includes treatments, clinical trials,
complimentary therapy, articles,
papers, links, discussion board, chat
rooms, and peer-to-peer network.
Sarcoma Foundation
of America
P.O. Box 458,
Damascus, MD 20872
PHONE: 301-520-7648
WEB: www.curesarcoma.org
Patient resources that include:
information and support, information
links, clinical trials and a public forum.
Soft Tissue Sarcoma:
NOAH
WEB: www.noah-health.org/en/
cancer/types/sarcoma/index.
html#SoftTissueSarcoma
Links to information on
Soft Tissue Sarcoma information
and organizations.
Soft Tissue Sarcoma:
MedlinePlus.gov
softtissuesarcoma.html
Links to overviews, latest news,
diagnosis, treatment, support
organizations, and clinical trials.
Urogenital
Germ cell tumors
including dysgerminoma,
prostate, Wilms’ tumor
(nephroblastoma), renal cell
cancer, clear cell sarcoma,
rhabdoid neuroepithelial.
Bladder Cancer:
Medlineplus.gov
bladdercancer.html
Links to disease information, diagnosis,
treatment, prevention, and support
organizations.
cervicalcancer.html
Links to disease information, diagnosis,
treatment, prevention, support
organizations, and more.
National Wilms’ Tumor
Study Group
The Children’s Hospital of Philadelphia
Fred Hutchinson Cancer
Research Center
1100 Fairview Avenue, N.
PO Box 19024
Seattle WA 98109-1024
PHONE: 800-553-4878
WEB: www.nwtsg.org
A federally funded, multi-institutional
study of the treatment of patients with
Wilms tumor. Organization involves
the collaboration of pediatric surgeons,
oncologists, radiation oncologists,
urologists, and allied health
professionals with a goal of developing
more effective treatments as well as
investigating the causes of this cancer.
Ovarian Germ Cell Cancers:
WEB: www.cancer.gov/cancertopics/
pdq/treatment/ovarian-germ-cell
Information on ovarian germ cell
cancer, diagnosis, treatment, and more.
Testicular Cancer:
MedlinePlus.gov
testicularcancer.html
Llinks to disease information,
diagnosis, treatment, prevention,
support organizations, and more.
Urology Health
WEB: www.urologyhealth.org
Provides a wide range of services,
including the website, publications,
an annual meeting and numerous
continuing medical education
opportunities. The website offers
a search database for information
on pediatric urology. Content is
accompanied by medical illustrations
when appropriate.
Wilms’ Tumor:
MedlinePlus.gov
wilmstumor.html
and National Library of Medicine.
Authoritative links to disease
information, diagnosis, treatment,
prevention, support organizations.
Rare Pediatric
Conditions
For rare cancers and related
disorders including fanconi,
neutropenia, langerhans, and
pulmonary blastoma, the
following websites may be
helpful.
Fanconi Anemia Research Fund
1801 Willamette Street, Suite 200
Eugene, OR 97401
PHONE: 541-687-4658
WEB: www.fanconi.org/
Education and support services to
affected families worldwide.
Information
Disease
Disease-Specific
-Specific
& Resources
Resources
Carrying you along.
Cervical Cancer:
Medlineplus.gov
Fanconi Canada
P.O. Box 38157
Toronto, ON M5N 3A9 Canada
PHONE: 416-489-6393
WEB: www.fanconicanada.org/en
Information and news about Fanconi
with links to family support.
Histiocytosis Association of
America
72 East Holly Avenue, Suite 101
Pitman, NJ 08071
PHONE: 800-548-2758
WEB: www.histio.org
Provides solutions to some of the
problems which are specific to patients
suffering from this disease and to offer
support to patients and their families;
to educate and establish better
treatments.
Langerhans Cell Histiocytosis
WEB: my.webmd.com/hw/raising_a_
family/nord408.asp
General information on langerhans.
Madison’s Foundation
P.O. Box 241956
PHONE: 310-264-0826
WEB: www.madisonsfoundation.org
Databases of rare pediatric diseases and a
glossary of unfamiliar terminology.
Unusual Cancers of Childhood
WEB: www.cancer.gov/cancertopics/pdq/
treatment/unusual-cancers-childhood
Information on unusual cancers in children.
for Rare Disorders
And in the end, it’s
not the years in your
life that count. It’s
the life in your years.
-Abraham Lincoln
55 Kenosia Avenue, PO Box 1968
Danbury, CT 06813-1968
PHONE: 800-999-6673
TDD: 203-797-9590
WEB: www.rarediseases.org
Identification, treatment, and cure of rare
disorders through programs of education,
advocacy, research, and service. Provides
medication assistance, networking,
resource guide, and a library of links, news
and information, including databases of
diseases, organizations and subscriptions.
Neutropenia
Support Association Inc.
P.O. Box 243, 971 Corydon
Winnipeg, Manitoba
Canada, R3M 3S7
PHONE: 800-663-8876
WEB: www.neutropenia.ca/general/
contact.html
Articles about Neutropenia organized into
different categories. Information is also
distributed through the mail to caregivers,
patients and their families.
Sussex County
Medical Association Neutropenia
123 Newton Sparta Rd
Newton, NJ 07860
PHONE: 973-579-6300
WEB: www.scma-docs.com/neutro_pg.htm
Information on neutropenia.
Syndromes &
Conditions
Aplastic Anemia
& MDS International Foundation
P.O. Box 613
Annapolis, MD 21404
PHONE: 800-747-2820
WEB: www.aplastic.org
Patient assistance and emotional support.
Provides educational materials and
updated medical information on aplastic
anemia, myclodysplastic syndromes, and
paroxysmal nocturnal hemoglobinuria.
Anemia:
MedlinePlus.gov
anemia.html
Information on various types of anemia,
including Fanconi , aplastic and more.
National Lymphedema Network
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612-2138
PHONE: 800-541-3259
FAX: 510-208-3110
WEB: www.lymphnet.org
Information on the prevention,
management and supportive care of
primary and secondary lymphedema to
patients and healthcare professionals.
Serves as a resource center for patients
and health care professionals, and
publishes a newsletter.
Von Hippel-Lindau Disease:
MedlinePlus.gov
Syndromes, Complications,
Side Effects related to
Cancer Treatment
WEB: www.cancer.gov/cancertopics
Links to patient/professional articles
on various cancer treatment topics,
including: pain, fatigue, heart and
gastrointestinal complications, late
effects of childhood cancer treatment,
lymphedema.
Carrying you along.
vonhippellindaudisease.html
Links to reputable sources of information
on the disease, treatments, and support
organizations.
Disease -Specific Resources
171 Clinton Rd
Brookline, MA 02146
PHONE: 800-767-4845
FAX: 617-734-8233
WEB: www.vhl.org
Information and support to families
with rare familial disorder Von Hippel
Lindau Syndrome, which can result in
cancer in patients who have visceral
lesions. Includes a reference handbook
for people with VHL, their families, and
support personnel.
Disease-Specific
Von Hippel Lindau
Family Alliance
Other
Mesothelioma Web
PHONE: 877-367-6376
WEB: www.mesotheliomaweb.org
Mesothelioma Web is a comprehensive,
patient-focused website that explains
the causes, symptoms, and treatments
for the cancer mesothelioma. The site
covers both juvenile and adult cancer.
The editors keep up with medical
research and are include links to on-line
resources for more information. The site
also is certified by the Health on the Net
Foundation as meeting their criteria for
accuracy and ethics. Our co-ordinators
can be reached toll-free at 1-877-3676376 for more information and help.
Support & Counseling
National organizations that offer a variety of support to help families.
American Cancer Association
Family faces are
magic mirrors
looking at people
who belong to us;
we see the past,
present and future.
-Gail Lumet Buckley
Atlanta, GA 30329-4251
PHONE: 800-ACS-2345, 800-227-2345
FAX: 404-325-2217
WEB: www.cancer.org
Nationwide, community-based,
voluntary health organization that
assists people with cancer through
research, education, advocacy and
service. The information line can help:
• Answer many questions by telephone
and offer free publications regarding
diagnosis, treatment, and nutrition.
• Information and counseling for the
cancer patient and the patient’s family
• Information and guidance concerning
ACS services, community health
services, and other resources, such as
providing transportation to and from
a doctor’s office, clinic or hospital for
treatment.
• Arranging for lodging (see Lodging)
• Home health care, blood programs,
assistance with employment problems
and social work assistance.
American Counseling
Association
5999 Stevenson Ave.
Alexandria, VA 22304
PHONE: 800-347-6647
FAX: 800-473-2329
WEB: www.counseling.org
Professional resources and educational
information.
American
Family Therapy Academy
1608 20th Street, NW, 4th Floor
PHONE: 202-483-8001
FAX: 202-483-8002
WEBSITE: www.afta.org
Resource for all concerned with the
health of the family. Provides a forum
for exchange of cutting edge ideas;
keep its members informed; fosters
policies that support the welfare of
families and children, social justice,
and cultural diversity; sponsors
annual meetings; conducts a biennial
clinical research meeting. Publishes a
newsletter.
American Society of
Pediatric
Hematology/
Oncology
4700 W. Lake
Glenview, IL 60025
PHONE: 847-375-4716
FAX: 847-375-6316
WEB: www.aspho.org
A professional society of
pediatric hematologists/
oncologists who study
and treat childhood
cancer and blood diseases.
Offers online resources
and links to aid in finding
other related information
through the Internet
about your child’s illness.
173 Duane Street Suite 3A
New York, NY 10013-3334
PHONE: 212-226-5525
WEB: www.acor.org
Provides access to mailing lists that
provide support, information, and
community to everyone affected by
cancer and related disorders. ACOR
also develops and hosts state-of-theart Internet-based knowledge
systems that allow the public to find
and use credible information relevant
to their illness.
Association of Oncology Social
Work Journal of
Psychosocial Oncology
1211 Locust Street
Philadelphia, PA 19107
PHONE: 215-599-6093
FAX: 215-545-8107
WEB: www.aosw.org/html/patients
Provides a wide range of services
directly to persons with cancer and
their families including counseling,
support, education, and resource
identification.
Association of Pediatric
Oncology Nurses
4700 W. Lake Avenue
Glenview, IL 60025
PHONE: 847-375-4724
FAX: 877-734-8755
WEB: www.apon.org
A professional organization for
registered nurses caring for children
with cancer and their families. Offers
information on nursing children with
cancer. Although this site is directed
towards nurses, parents will find
helpful information and learn a nurse’s
perspective on childhood cancer as
well as the standard of care that is
expected of them.
Bandaids & Blackboards
WEB: www.lehman.cuny.edu/faculty/
jfleitas/bandaides
Site about growing up with medical
problems. Its goal is to help people
understand what it’s like, from the
perspective of the children and teens
who are doing just that. These kids
have become experts at coping with
problems that most of you have never
heard of. They’d like you to know how
they do it, and they hope that you’ll be
glad you came to visit. The contents
are divided into three ponds; one for
kids, one for teens, and one for adults.
Bear Necessities
Pediatric Cancer Foundation
23 W. Hubbard St. 300Fl
Chicago, IL 60610
PHONE: 312-836-2327
FAX: 312-836-1284
WEB: www.bearnecessities.org
Attends to immediate needs and
immediate research to help fight
pediatric cancer.
Bravekids.org
1592 Union Street
San Francisco, CA 94123
PHONE: 415-561-2393
WEB: www.bravekids.org
Resources to help your child, support
from other parents, and medical
information.
Association of Cancer
Online Resources (ACOR)
Burger King Cancer Caring
Center (Pittsburgh Area Only)
4117 Liberty Ave.
Pittsburgh, PA 15224
PHONE: 412-622-1212
FAX: 412-622-1216
WEB: www.cancercaring.org
Offers support for people diagnosed
with cancer and their families and
friends. Dedicated to help people cope
with the emotional impact of cancer.
Cancer Care, Inc.
275 7th Ave
New York, NY 10001
PHONE: 800-813-4673
FAX: 212-719-0263
WEB: www.cancercare.org
Service programs include group,
individual, family, and bereavement
counseling (in person, online and
through telephone); information and
referral to local community resources;
supplementary financial assistance
for home care, transportation and
pain medication; volunteer visitor
program, community education for
the public on site, online and through
teleconference programs; technical
assistance to professionals regarding
psychosocial aspects of cancer; and
an African-American and Hispanic
Outreach Program.
Cancer Counseling, Inc.
4101 Greenbriar, 317
Houston, TX 77098
PHONE: 713-520-9873
WEB: www.cancercounseling.info/
Free professional counseling and
educational programs to cancer patients,
their loved ones, professionals, and the
public. Publishes numerous educational
materials and a newsletter. Psychiatrists,
psychologists, and social workers conduct
individual, family, and group counseling
sessions.
Cancer Hope Network
Friends are those
rare people who
ask how you are
and then wait to
hear the answer.
-Ed Cunningham
2 North Road, Suite A
Chester, NJ 07930
PHONE: 887-467-3638
WEB: www.cancerhopenetwork.org
Free, confidential, one-on-one support
to people with cancer and their families.
Matches patients with trained volunteers
who have themselves undergone a
similar experience. Provides support
and hope helping patients and families
look beyond the diagnosis, cope with
treatment, and start living life to its
fullest.
Cancer Infomation and
Counseling Line
1600 Pierce Street
Denver, CO 80214
PHONE: 800-525-3777
WEB: www.amc.org
National toll-free line that provides
medical information, emotional support,
and resources.
CancerNet
1900 Duke St. Ste. 200
PHONE : 703-299-0150
WEB: www.asco.org
Brings the expertise and
resources of the American Society
of Clinical Oncology (ASCO),
the voice of the world’s cancer
physicians, to people living with
cancer and those who care for
and care about them. ASCO is
composed of more than 27,000
oncologists globally who are the
leaders in advancing cancer care.
All the information and content
was developed and approved
by the cancer doctors who are
members of ASCO, making
CancerNet the most up-to-date
and trusted resource for cancer
information on the Internet.
CancerSourceKids.com
40 Tall Pine Drive
Sudbury, MA 01776
WEB: www.cancersourcekids.com
Cancer information for children 6-12,
teens13-18, as well as parents.
Candlelighter’s Childhood Cancer
Foundation
PO Box 498
Kensington, MO 20895-0498
PHONE: 800-366-2223
WEB: www.candlelighters.org
National pediatric cancer foundation
provides information, local support
groups and specialized information to
families and caregivers of children with
cancer. Organization formed by parents
of young cancer patients. Helps families
cope with the emotional stresses of
their experiences, provides information
on camps for children with cancer,
has an ombudsman program to assist
families and survivors with problems
in education, employment, insurance,
welfare or military enlistment.
Caring Bridge
3440 Federal Dr, Suite 100
Eagan, MN 55122
PHONE: 651- 452-7940
WEB: www.caringbridge.org
Free web service connecting
patients with friends and families.
A no-cost service providing support and
encouragement to thousands of families
facing difficult times.
Chai Lifeline
151 30th St
New York, NY 10001
PHONE: 877-242-5433
WEB: www.chailifeline.org
Maintains a large network of
free health support services that
provides invaluable practical,
psychological and emotional assistance
to more that 3,000 seriously ill children
and their families.
Child Life Council, Inc.
11820 Parklawn Drive, Suite 202
Rockville, MD 20852
PHONE: 301-881-7090
WEB: www.childlife.org
Strives to reduce the impact of stressful or
traumatic life events and situations which
affect the development, health, and wellbeing of hospitalized infants, children,
youth, and families.
WEB: childhoodcancerguides.org/
Support and education, as well as tips
on how to cope with insurance and how
to maintain communication, created
especially for parents of a child with a
solid tumor cancer.
Childhood Leukemia Foundation
1608 Route 88 West, Suite 203
Brick , NJ 08724
PHONE: 888-253-7109
WEB: www.clf4kids.com
Emotional, financial, social, educational,
and recovery support to children with
cancer and their families. CLF serves as a
resource center and works in partnership
with over 130 specialized cancer
treatment centers nationwide.
Children’s Cancer Association
433 NW 4th Avenue, Suite 100
Portland, OR 97209
PHONE: 503-244-3141
WEB: www.JoyRx.org
Founded more than a decade ago by a
family who has been there, the Children’s
Cancer Association brings JoyRx to
seriously ill children and their families,
in the hospital and at home. When
families need support, CCA is there with
award-winning programs and resources,
available at no cost to those in need, in
Oregon, SW Washington and nationally.
Christian Cancer Support
WEB: www.squirreltales.com
Practical tips and encouragement for
parents of kids with cancer. This Christian
cancer support site is specially designed
for families who have a child diagnosed
with cancer. Families can correspond with
other families who have gone through
similar experiences, find comfort through
other family’s stories and obtain useful
advice on childhood cancer care, from
cancer health tips and sibling’s care, to
decorating a hospital room and end of life
concerns and more.
Coping Magazine
PO Box 682268
Franklin, TN 37068
PHONE: 615-790-2400
WEB: www.copingmag.com/cancer
National cancer magazine for patients,
caregivers, and health professionals.
Includes articles on practical techniques
for coping with the emotional aspects
of cancer, success stories, and a list of
resources.
CorStone Center
33 Buchanan Drive
Sausalito, CA 94965
PHONE: 415-331-6161
FAX: 415-331-4545
WEB: www.corstone.org
Support to individuals and families facing
life-threatening illness. The program
is designed to supplement traditional
healthcare and operates under the
premise that true healing has a spiritual
and emotional component.
Exceptional Cancer Patients
522 Jackson Park Drive
Meadville, PA 16335
PHONE: 814-337-8192
WEB: www.ecap-online.org
Provides individuals and group
counseling for patients, families, and
cancer survivors. Founded by Bernie
Siegal, M.D., author of Love, Medicine
and Miracles and other books. Siegal
is one of the most famous, and still
controversial, advocates of mind-body
approaches to cancer.
Childhood Cancer Guides
Exceptional Parent Magazine
65 East Route 4
River Edge, NJ 07661
PHONE: 201-489-4111
WEB: www.eparent.com
Information, support, ideas,
encouragement & outreach for parents
and families of children with disabilities.
Family Voices
2340 Alamo SE Suite 102
Albuquerque, NM 87106
PHONE: 888-835-5669
WEB: www.familyvoices.org
Resources, tips, brochures and a
newsletter offering advocacy for
children’s health care needs.
Father’s Network
WEB: www.fathersnetwork.org
Celebrates and supports fathers and
families raising children with special
health care needs.
Federation for Children
with Special Needs
1135 Tremont Street, Ste. 420
Boston, MA 02120
PHONE: 800-331-0688
WEB: www.fcsn.org/
Services to families of children with
special health care needs. Provides
parent training, support groups and
information and referral to a variety
of services in other states and local
communities.
Food and Drug Administration
5600 Fishers Lane Rockville, MD 20857
PHONE: 888-463-6332
WEB: www.fda.gov
Cancer liaison office whose staff works
closely with cancer patients, listening to
their concerns and educating them about
the FDA drug approval process, cancer
clinical trials, and access to investigational
therapies.
Gesundheit Institute
PO Box 3134
Hagerstown, MD 21741-3134
PHONE: 703-525-8169
WEB: www.patchadams.org
Hospital devoted to free healthcare,
healing, and humor. Founded by Patch
Adams, MD.
Gold Ribbons
for Childhood Cancer
Friendship
doubles our joy
and divides
our grief.
-Swedish Proverb
8661 S. Highland Drive #190
Sandy UT 84093
PHONE: 800-238-1719
WEB: www.goldribbons.com
Gold ribbon/childhood cancer awareness
items for sale, but also childhood cancer
information and links to various childhood
cancer organizations, websites in honor
and in memory of children who have
or have had cancer. Offers customized
jewelry items for sale.
Healthfinder
PO Box 1133
Washington DC 20013-1133
WEB: www.healthfinder.gov/
Links to reliable health
information sources
including inline
publications, websites,
support groups,
government agencies, and
non-profit organizations.
Honeysuckle
Foundation for
Children with Cancer
P.O. Box 1491
Melville, NY 11747
PHONE: 631-847-7735
EMAIL: info@
honeysucklefoundation.org
WEB: www.
honeysucklefoundation.org
Emotional support for
children diagnosed with
cancer and their families
through message boards,
links to other resources,
fundraising ideas, ways
to increase community
involvement and
awareness.
Hugs and Hopes
P.O. Box 56 Harshaw, WI 54529
WEB: www.hugsandhope.org
For sick kids battling critical illness.
Every month they feature new stories
and photos of sick children on the
website. Visitors and volunteers pray for,
encourage, and send children cheery
postal mail (a.k.a.”happy mail”).
They also provide goodie packages, wish
granting, balloon bouquets, Christmas
gifts, and more.
Imerman Angels
400 W. Erie Street, Suite #405
Chicago, IL 60654
PHONE: 312-274-5529
WEB: www.imermanangels.org
Provides one-on-one cancer support:
connecting cancer fighters, survivors and
caregivers.
Kid’s Health
WEB: www.kidshealth.org/
Information for families about
children’s health issues. Links to
pediatric related needs and cancer,
kids’ pages relating to development,
mental health, and illnesses.
Kid’s Health for Parents
medical/cancer/cancer.html
Doctor-approved health information
about children from before birth through
adolescence. Provides families with
accurate, up-to-date, and jargon-free
health information they can use.
Lance Armstrong Foundation
2201 E. Sixth St , Austin, TX 78702
PHONE: 866-673-7205
FAX: 512-236-8482
WEB: www.livestrong.org
LAF provides the practical information
and tools people living with cancer need
to live strong with four core program
areas: education, advocacy, public health,
and research.
Med Help International
WEB: www.medhelp.org
Founded in 1994 out of a shared need for
better medical information and support,
MedHelp is the pioneer in online health
communities. The MedHelp site connects
people with the leading medical experts
and others who have similar experiences.
Pediatric Oncology
Resource Center
Cancer Society
Pen-Parents, Inc.
PO Box 907, Blue Ridge, GA 30513
PHONE: 800-651-1151
WEB: www.p2pusa.org
Provides resources and referrals
designed especially for parents,
relating to pediatric cancer.
One South Memorial Drive, Suite 800,
St. Louis, MO 63102
PHONE: 800-532-6459
WEB: www.children-cancer.com
Provides financial support and advocacy
and interceding on behalf of children
with bills, home care needs, insurance
companies, hospitals, and other agencies
to negotiate reasonable financial
solutions for a child’s care. Support
services and education about childhood
cancer and nutrition is available as well.
National Mental
Health Association
2001 N. Beauregard Street, 12th Floor
PHONE: 703-684-7722
WEB: www.nmha.org
USA’s oldest and largest nonprofit
organization addressing all aspects of
mental health and mental illness. With
more than 340 affiliates nationwide,
works to improve the mental health of
all Americans, especially the 54 million
people with mental disorders, through
advocacy, education, research and service.
On Top of Cancer
WEB: www.ontopofcancer.org/children
Key cancer information online, with
emphasis on searching for the best
cancer treatment, support. Section on
childhood cancer.
Pacer Center
Parent Advocacy Coalition
for Educational Rights
8161 Normandale Blvd.
Minneapolis, MN 55437
PHONE: 800-537-2237
WEB: www.pacer.org/grandparent
Information on how to support, inform
and empower grandparents to act as
effective advocates for their special-needs
grandchildren.
Parents Against Cancer
P.O. Box 92644
Long Beach, CA 90809-2644
PHONE: 562- 943-5626
WEB: www.parentsagainstcancer.com
Support for people whose lives have been
affected by childhood cancer and blood
disorders.
WEB: www.acor.org/ped-onc
For parents, friends, and families of
children who have or had childhood
cancer. This site was created by and for
people who know young people who are
recovering from cancer.
3041 Olcott Street
Santa Clara, CA 95054
PHONE: 408-727-5775
WEB: www.php.com
A comprehensive on-line parent-directed
family resource center for children with
any kind of special need.
Psych Central
WEB: www.psychcentral.com
The Internet’s largest and oldest
independent mental health network,
providing reliable, trusted information &
self-help support communities for over
14 years. A catalog of support groups and
mailing list groups organized by disability
and condition.
National Parent to Parent
Support and Information System
R.A. Bloch Cancer Foundation
4435 Main Street, Kansas City, MO 64111
PHONE: 800-433-0464
WEB: http://www.blochcancer.org
Hotline that matches newly diagnosed
cancer patients with someone who has
survived the same kind of cancer.
Offers free information, resources and
support groups.
Self-Help Sourcebook Online:
Links to Cancer Organizations
WEB: www.mentalhelp.net/selfhelp/
A searchable database of information
on over 1,100+ national, international
and demonstrational model self-help
support groups, ideas for starting groups,
and opportunities to link with others
to develop needed new national or
international groups.
Society of
Critical Care Medicine
701 Lee Street, Suite 200
Des Plaines, Illinois 60016
PHONE: 847- 827-6869
WEB: www.myicucare.org/Pages
Information to assist families with
important healthcare decisions.
Special Love
117 Youth Development Court
Winchester, VA 22602
PHONE: 888-930-2707
WEB: www.speciallove.org
Offers cancer families a network of
support, made up of other patients and
families who know and understand the
trials and triumphs of fighting cancer.
Gives college scholarships for kids with
cancer and emergency funds for families
in trouble. Offers links to resources, kids
sites and pen pals, operates weeklong
camps and weekend programs for
children with cancer ages 7 to 17.
Starlight Children’s Foundation
Happiness is like
a butterfly which,
when pursued, is
always beyond
our grasp, but, if
you will sit down
quietly, may alight
upon you.
-Nathaniel Hawthorne
5900 Wilshire Blvd., Suite 2530
PHONE: 800-274-7827
FAX: 310-207-2554
WEB: www.starlight.org
Serves seriously ill children (ages 4-18)
with wish granting and in-hospital
entertainment. Targeted in two specific
areas: out-patient (wish granting and
pen-pal programs) and in-patient
entertainment programs (Fun Centers,
Starlight Rooms, clown programs,
hospital parties). Addresses the core
issues that accompany illness- the pain,
fear, loneliness, and depression that
can be as damaging as the sickness
itself. Designed and chaired by Steven
Spielberg, links to kids interactive sites.
Teens Health
WEB: http://kidshealth.org/teen
Doctor-approved health information
about children from before birth
through adolescence. It provides families
with accurate, up-to-date, and jargonfree health information they can use.
KidsHealth has separate areas for kids,
teens, and parents - each with its own
design, age-appropriate content.
Ulman Cancer Fund
for Young Adults
4725 Dorsey Hall Drive, Suite A
Ellicott City, MD 21042
PHONE: 888-393-3863
WEB: www.ulmanfund.org
Support programs, education, and
resources for young adults and families.
Vital Options International
15821 Ventura Blvd., Suite 645
Encino, CA 91436-2946
PHONE: 818-788-5225
FAX: 818-788-5260
WEB: www.vitaloptions.org
Communication, support and advocacy
to help people cope with cancer.
Facilitates a global cancer dialogue. Best
known for The Group Room - weekly
syndicated radio call-in cancer talk show.
Interactive website provides cancer
information and resources.
Wellness Community
919 18th St. NW Ste. 54
Washington D.C. 20006
PHONE: 888-793-well
WEB: www.thewellnesscommunity.org
Provides a professional program of
emotional support, education and hope.
Provides a full range of support services
to cancer patients and their families
in a comfortable home-like setting.
Offers drop-in and on-going support
groups, networking groups for specific
types of cancer, educational workshops,
stress management sessions, lectures
by experts in the field of oncology, and
social gatherings.
The following organizations offer support and information on
managing pain associated with cancer, cancer treatment,
and its side-effects.
American Academy of Pain
Management
13947 Mono Way #A
Sonora, CA 95370
PHONE: 209-533-9744
WEB: www.aapainmanage.org
Information about managing pain in
a home care environment, resources,
and links to other related information.
Provides credentialing to practitioners
in the area of pain management.
American Alliance of Cancer
Pain Initiatives
1300 University Ave, Room 4720
Madison, WI 53706
PHONE : 608-265-4013
FAX: 608-265-4014
WEB: www.aacpi.org
On-line “Resource Center” which
offers information about cancer pain
management. Offers complementary
educational materials, videos for loan
and resources for purchase. Many free
resources and helpful information can
be accessed through their website.
American Pain Foundation
201 N Charles St. Suite 710
Baltimore, MD 21201-4111
PHONE: 888-615-7256
WEB: www.painfoundation.org
Online resource center for children
with pain, their families, friends and
caregivers. Offers information on pain
causes, relief techniques, insurance
benefits and medications. Offers links
to other pain resources and support.
American Pain Society
4700 W. Lake Avenue
Glenview, IL 60025-1485
PHONE: 847-375-4731
FAX: 877-734-8750
WEB: www.painmed.org/patient
Link to the patient portal of the
American Academy of Pain Medicine.
Includes information on pain, help
with finding pain management
professionals, and links to other
organizations.
American Society for Pain
Management Nursing
7794 Grow Drive
Pensacola, FL 32514
PHONE: 888-342-7766
WEB: WEB: www.aspmn.org/Links/
national_international.htm
Links to organizations and websites on
Pain Management.
Pain Management
Pain Management
Believe in Tomorrow
6601 Frederick Road
Baltimore, MD 21228
PHONE: 800-933-5470
FAX: 410-744-1984
WEB: www.dreamsurfer.org
Three programs that provide support
to children from their diagnosis
with a life-threatening illness and
throughout their treatment process.
The Pain Management & Distraction
Technology program helps children
by reducing their pain, anxiety and
fear, and by bringing comfort to their
medical procedures. Has implemented
diversion technology and forms of
distraction, called Children’s ImagineAreas, in hospital clinics.
Cancer Information Service
PHONE: 800-422-6237
WEB: www.cancer.gov
Offers a variety of publications on pain,
treatment side effects, supportive care,
cancer types, children with cancer,
complementary treatments, etc. Both
patient and professional versions
of many publications available. Can
find information by topic menus or
searching.
CancerNet
PHONE: 800-720-8933
WEB: www.cancernet.com
Provides information and articles on
relieving pain associated with cancer.
Cancer Pain
WEB: www.cancer-pain.org
Information on state-of-the-art
management of cancer pain for
patients, caregivers and healthcare
professionals.
Cancer Pain Resources
The Mayday Pain Project
WEB: www.painandhealth.org
Thorough information about pain,
offers guidance in how to manage it
and provides links to other resources.
Site also provides a video library.
Cancer Pain Management
in Children
WEB: www.childcancerpain.org
Information and resources including
both pharmaceutical and nonpharmaceutical pain management.
Climb up on some
hill at sunrise.
Everybody needs
perspective once
in a while, and
you’ll find it there.
-Robb Sagendorph
City of Hope Pain/Palliative
Care Resource Center
1500 East Duarte Road
Duarte, CA 91010
PHONE: 626-359-8111 x63829
WEB: prc.coh.org/pediatrics.asp
Information on quality of life, patient
education, family/home care,
pediatrics, costs, pain assessment
tools and many more. Some materials
available online, others may be
purchased.
CureSearch
4600 East West Highway, #600
PHONE: 800-458-6223
WEB: www.curesearch.org/for_
parents_and_families/
Resources and techniques to help
when the focus is on providing both
physical and emotional comfort to a
child and their family, and discovering
ways to preserve their dignity and
memory. Links include: palliative care,
hospice, talking with your child.
Get Palliative Care.org
WEB: www.getpalliativecare.org
Helps patients & families facing a
serious illness, find relief from pain,
from other symptoms, such as fatigue,
nausea, loss of appetite and shortness
of breath. Relief from stress.
Help to better understand illness
and choices for care. Palliative care
is not the same as hospice care. The
goal of palliative care is to relieve the
pain, symptoms and stress of serious
illness – whatever the prognosis. It
is appropriate for people of any age
and at any point in an illness. It can be
delivered along with treatments that
are meant to cure you.
Healthfinder:
Managing Cancer Pain
P.O. Box 1133
Washington, DC 20013-1133
EMAIL: [email protected].
WEB: www.healthfinder.gov
Searchable gateway from the National
Institutes of Health. Find information
by topic menus or by searching.
Pain:
MedlinePlus.gov
WEB:
www.nlm.nih.gov/medlineplus/pain
Many authoritative links to information
on pain, chronic pain, different types
of pain, support organizations. Scroll
down the page for links to pain in
children.
NIH Pain Consortium
WEB: www.painconsortium.nih.gov/
pain
Provides many links to pain
management information, including
links to Cancer Pain Management.
P.O. Box 70045
Houston TX 77270-0045
PHONE: 713-862-9332
WEB: www.paincare.org
Support for patients who are suffering
from intractable pain including: a forum
for expression; representation; referrals
to specialists throughout the country;
certification of intractable pain patients,
which identifies them officially to all
physicians, agencies, pharmacists and
regulatory entities; in-patient chronic
pain treatment program, which
establishes diagnosis; and a library
of related information.
National Pain Foundation
3511 S. Clarkson Street
Englewood, CO 80113
WEB: www.nationalpainfoundation.org
General information and includes:
coordination of information, community
outreach, links people in pain to resources.
University of Texas MD Anderson
Cancer Center
1515 Holcombe Boulevard
Houston, TX 77030
PHONE: 800-392-1611
WEB: www.mdanderson.org/topics/
paincontrol
Information on pain management and
includes news and articles, definitions,
treatments, resources, clinical trials.
World Health Organization, USA
Liaison Office in Washington
1775 K Street, NW, Suite 430
Washington, D.C. 20006
PHONE : 202-331-9081
FAX: 202-331-9097
WEB: http://www.who.int/topics/cancer
Information on pain management with a
section on Childhood Cancer Pain.
Pain Management
National Foundation
for the Treatment of Pain
Cancer Pain in Children: NOAH
WEB: www.noah-health.org/en/cancer/pain/
what/childpain.html
Comprehensive information on all aspects
of pain management including a section
exclusive to Pediatric Cancer Pain. Includes
cancer pain and kids, pain management,
pain medication, non-drug management
and more.
Pain Management:
OncoLink
Abramson Cancer Center of the University of
Pennsylvania
3400 Spruce Street - 2 Donner
Philadelphia, PA 19104-4283
FAX: 215-349-5445
WEB: www.oncolink.org/search/results.
cfm?str=cancer+pain
Section on Pediatric Cancer Pain
Management that provides helpful
information and tips on minimizing the
effects of chemotherapy, radiation, surgical
procedures, and more.
Disability
The following organizations provide support, information, and/or
services to families who have a disabled child. Disabilities can range
from hearing and vision loss to limb loss and learning disabilities.
Your child may qualify for help from these organizations if he or she
has disabling effects associated with cancer.
Federal & State
Agencies
Other Disability
Agencies
U.S. Department of Health &
Human Services Office on Disability
Abledata
WEB: www.hhs.gov/od/topics
Disability topics including Americans
with Disabilities Act, housing, education,
employment, children & youth, and
community integration.
State Departments of Disability
WEB: www.hhs.gov/od/topics
Links to Disability Departments in
each of the 50 states. Click on your
state to find available resources,
services and links.
8630 Fenton St., Ste 930
Silverspring, MD 20910
PHONE: 800-227-0216,
TTY: 301-608-8912
WEB: www.abledata.com
Information on thousands of assistive
devices for home health care, from
eating utensils to wheelchairs, prices,
names, and addresses of suppliers.
About Face
123 Edward Street, Suite 1003
Toronto ON M5G 1E2 Canada
PHONE: 800 665-3223
WEB: www.aboutfaceinternational.org
Information, support services,
educational programs, outreach and
public awareness. The goal is to create
an accepting environment where
people who have facial differences can
learn to accept themselves and confront
the challenges they encounter.
Accreditation Council on
Services for People with
Disabilities
100 West Road, Suite 406
Towson, MD 21204
PHONE: 410-583-0060
FAX: 410-583-0063
WEB: www.thecouncil.org
Accreditation training and consultation
to people caring for the disabled.
11730 Plaza America Drive, Suite 300
Reston, VA 20190
PHONE: 703-790-8631
WEB: www.audiology.org
Information and database to assist
in finding an audiologist, answers to
frequently asked questions, consumer
guides and links to other resources.
American Academy of Orthotists
and Prosthetists
1331 H Street, NW, Suite 501
PHONE: 202-380-3663
FAX: 202-380-3447
WEB: www.oandp.org
Advanced continuing education and
improved quality of prosthetics and
orthotics care.
American Amputee Foundation
Box 250218 Hillcrest Sta.
Little Rock, AR 72225
PHONE: 501-666-2523
WEB: www.americanamputee.org
Information on services aiding people
who are disabled due to amputation.
Provides referrals to organizations
offering information and support.
American Council on Education
WEB: www.finaid.org/otheraid/disabled
List of resources for disabled students
seeking financial assistance with tuition
for postsecondary education.
Americans with
Disabilities Act
US Department of Justice
950 Pennsylvania Ave, NW
Washington D.C. 20530
PHONE: 800-514-0301
TTY: 800-514-0383
WEB: www.ada.gov
Support and information to people
with disabilities.
American Council of the Blind
1155 15th Street, NW, Suite 1004
PHONE: 800-424-8666
WEB: www.acb.org
Toll-free information and referral on
all aspects of blindness, scholarship
assistance, public education and
awareness training, support to consumer
advocates and legal assistance,
leadership and legislative training,
consulting with industry regarding
employment, governmental monitoring,
consultation and advocacy including
the “Washington Connection,” a national
legislative hotline.
Amputee Coalition of America
900 East Hill Avenue, Suite 285
Knoxville, Tennessee 37915-2568
PHONE: 888-267-5669
WEB: www.amputee-coalition.org
Advocates for the rights of people with
limb loss. This includes access to, and
delivery of, information, quality care,
appropriate devices, reimbursement, and
the services required to lead empowered
lives. Provides resources, booklets,
video tapes, fact sheets, technical help,
and training programs. Also publishes
inMotion Magazine.
Disability
American Academy
of Audiology
American Disability Association
2201 6th Avenue South
Birmingham, AL 35233
PHONE: 205-328-9090
WEB: www.adanet.org
Education and support to people with
disabilities. Helps people locate disability
information and resources.
Helps employees with disabilities find
employers who are looking for them.
Helps foster the development of new
and useful resources for people with
disabilities. Helps develop and broadcast
disability education for our global
community. Helps establish greater
cross-disability awareness.
American Society
for Deaf Children
P.O. Box 3355 Gettysburg, PA 17325
PHONE: 717-334-7922
WEB: www.deafchildren.org
Support, encouragement, and
information to families raising children
who are deaf or hard of hearing. Services
include: Parents Connected Network and
a “First Year Free Program” for parents of
newly identified deaf or hard of hearing
children. Offers an introductory one year
membership at no charge.
Beginnings for Parents of
Hearing Impaired Children, Inc.
3714 Benson Drive, Suite A
Raleigh, NC 27609
PHONE: 919-850-2746
TTY: 800-541-4327
WEB: www.ncbegin.org
Emotional support, information, and
referrals about all methodologies and
different educational programs for
families with children who are hearing
impaired.
Disability Rights Education &
Defense Fund
2212 Sixth Street
Berkeley, CA 94710
PHONE: 510-644-2555
WEB: www.dredf.org
Education, training and technical
support. DREDF is the leading national
law and policy center in disability civil
rights.
Disabilities:
Medlineplus.gov
disabilities
Links to information on many
disability topics.
Disabled Children’s
Relief Fund
If you wait to
do everything
until you’re sure
it’s right, you’ll
probably never do
much of anything.
-Win Borden
402 Pennsylvania Avenue
Freeport, NY 11520
PHONE:
516-377-1605
WEB: www.dcrf.com
Advocate for the rights and needs of
disabled children, including those
with disabilities brought on by
cancer treatments and side effects.
Provides cash grants for children with
preference given to families who do
not have health insurance.
Disabled Sports USA
451 Hungerford Drive, Suite 100
Rockville, MD 20850
PHONE:
301-217-0960
EMAIL: KBauer@
dsusa.org
WEB: www.dsusa.
org
Nationwide sports
rehabilitation
programs for
anyone with
a permanent
physical disability.
Supports sports
as a rehabilitation
process and offers
competitive
programs in
summer and
winter sports. It
also conducts
competitions and
training camps
to prepare and
select athletes
to represent the
United States at the
summer and winter
Paralympic games.
Family Village – Resources
for Siblings of Persons with
Disabilities
general/frc_sibl.htm
Resources for siblings of persons with
disabilities.
Family Village - Sites Related
to Supports for Youth with
Disabilities and/or Chronic
Health Conditions
education/kids.html
Links to resources for children with
disabilities.
Federation for Children with
Special Needs
1135 Tremont St. #420
Boston, MA 02116
PHONE: 800-331-0688
WEB: www.fcsn.org
Provides a number of services to
families of children with special health
care needs. Provides information and
referral to a variety of services in other
states and local communities, parent
training and the development of family
education and support groups.
Genetic Alliance
4301 Connecticut Avenue NW
PHONE: 202-966-5557
WEB: www.geneticalliance.org
Information on genetic counseling,
genetic conditions. They seek to
empower individuals and advocacy
organizations to help better the lives
of individuals and families living with
genetic conditions.
HEATH Resource Center
The George Washington University
2121 K Street, NW Suite 220
WEB: www.heath.gwu.edu/
Postsecondary education for
individuals with disabilities.
Information exchange about
educational support services,
policies, procedures, adaptations, and
opportunities at American campuses,
vocational-technical schools, and
other postsecondary training
entities. Develops training modules;
publishes resource papers, fact sheets,
directories, and website information.
Fosters a network of professionals in
the arena of disability issues.
iCan, Inc.
Kids Together, Inc
P.O. Box 574
Quakertown, PA 18951
WEB: www.kidstogether.org
Provides helpful information and
resources to enhance the quality of life
for children and adults with disabilities.
Support services for children and adults
with disabilities, provide information,
resources, educational materials and
trainings on inclusion and issues on
disabilities, educate the public about
inclusion and it’s benefits for everyone,
and demonstrate inclusive practices
through various community events.
Let’s Face It
P.O. Box 29972
Bellingham, WA 98228-1972
PHONE: 360-676-7325
WEB: www.faceit.org/contact.html
Links people with facial disfigurement
and family/friends to resources that can
enrich their lives. The website includes
information on: conferences, resources
for various conditions, pain control, legal
issues, support to siblings and fathers,
resource links, education, self-esteem
links, books, videos, newsletters.
Lighthouse for the Blind
111 E. 59th Street, New York, NY 10022
PHONE: 800-829-0500
WEB: www.lighthouse.org
Free information on vision rehabilitation
and other eye-related diseases and can
refer individuals to resources in their
community. Has a free catalog on
low-vision aids.
Hearing Disorders
and Deafness: Medlineplus.gov
hearingdisordersanddeafness
Links to information, support
organizations, specific treatments and
disorders related to deafness.
Miracle Ear
Children’s Foundation
5000 Cheshire Lane, North
Minneapolis, MN 55446
PHONE: 877-268-4264
WEB: www.miracleear.com
Provides hearing aids to children
whose families do not qualify for public
assistance. Offers information on
alternative communication and offers
a variety of educational materials and
brochures.
Disability
870 Bowers St.
Birmingham, Mich. 48009
WEB: www.icanonline.net
The website is a place where people
affected by disabilities can take
advantage of the community building
power of the Internet. A one-stop
resource for information, guidance,
conversation and companionship. iCan.
com brings together content, community
and resources in one place that is easy to
navigate.
National Federation of the Blind
1800 Johnson Street,
Baltimore, MD 21230
PHONE: 410-659-9314
WEB: www.nfb.org/nfb/Default.asp
Materials center, International Braille
and Technology Center, NFB-NEWSLINE
for the Blind (free talking newspaper
service), national and local newspapers
with the use of only a touch-tone
telephone, a job-line through a
telephone menu system to anyone free
of charge.
Children & Youth with Disabilities
Box 1492, Washington, DC 20013
PHONE: 800-695-0285
WEB: www.nichcy.org
Information and referral to assist parents,
educators, caregivers, advocates, and
teachers in helping children and youth
with disabilities participate as fully as
possible at school, at home, and in their
community. Answers questions, matches
families with common concerns, and
maintains a database of information, and
offers free pamphlets and information
on disabilities and the rights of disabled
children and their parents.
National Lekotek Center
3204 W. Armitage Avenue
Chicago, IL 60647
PHONE: 773-528-5766
WEB: www.lekotek.org
Makes the world of play accessible to
children with all types of disabilities
through special play and learning centers
where they can have fun with traditional
toys, adapted toys, books and computers.
Nationwide, there are 37 Lekotek sites
that offer family play sessions, toy
lending libraries, Compuplay family
computer centers, and other innovative
community-specific programming.
National Library Service for the
Blind and Physically Handicapped
The Library of Congress
WEB: www.loc.gov/nls/
Free library program of Braille and audio
materials circulated to eligible borrowers
in the United States by postage-free mail.
Includes a Kids Zone and links to local
participating libraries.
National Rehabilitation
Information Center
4200 Forbes Blvd, Suite 202
Lanham, MD 20706
PHONE: 800-346-2742
TTY: 301-495-5989
EMAIL: heitechservices.com
WEB: www.naric.com
Information center focusing on disability
and rehabilitation issues and research.
Provides reference and referral services,
as well as custom database searches of
the REHABDATA bibliographic database.
Provides information on prosthetics,
equipment and supplies. Produces the
REHABDATA database, a free newsletter
on disability and rehabilitation research
and resources and free resource guides.
North American Riding for the
Handicapped Association
PO Box 33150 Denver, CO 80233
PHONE: 800-369-7433
WEB: www.narha.org
Fosters therapeutic equine activities
through education, communication,
standards and research for people with
and without disabilities. Promotes more
than 650 equine facilitated therapy and
activity programs in the United States and
Canada.
National Information Center for
Psych Central
WEB: www.psychcentral.com
Catalog of support groups and mailing
list groups organized by disability and
condition.
United Ostomy Association
19772 MacArthur Blvd., Suite 200
Irvine, CA 92612-2405
PHONE: 800-826-0826,
WEB: www.uoaa.org
Information and support dedicated to
complete rehabilitation of all ostomates.
Wheel to Walk Foundation
PO Box 20146, Portland, Oregon 97294
PHONE: 503-257-1401
WEB: www.wheeltowalk.com
Helps children who experience difficulty
obtaining funding for essential equipment
from their insurance companies from leg
braces, wheelchairs to home care.
Wheelchair Foundation
3700 Blackhawk Plaza Circle
Danville, CA 94506
PHONE: 877-378-3839
WEB: www.wheelchairfoundation.org
Leads an international effort to deliver
a wheelchair to every man, woman
and child in the world who needs one.
For those individuals, the Wheelchair
Foundation offers freedom, self-reliance,
mobility and hope.
A listing of registries offering donor and transplant information
and networking. Many organizations will also help families with
fundraising efforts if transplants are not covered through insurance.
American Kidney Fund
6110 Executive Blvd. Ste, 1010
Rockville, MD 20852
PHONE : 800-638-8299
WEB: www.akfinc.org
Provides direct financial aid to needy
kidney patients. It also provides
information on organ donations and
kidney related diseases. Some of the
services provided: patient grants,
patient emergency funds, children
camp grants, pharmacy programs &
equipment.
American Liver Foundation
Bone Marrow Transplant
Information Network
2900 Skokie Valley Road, Suite B
Highland Park, IL 60035
PHONE: 888-597-7674
WEB: www.bmtinfonet.org
Publications and support services to
bone marrow, peripheral blood stem,
and cord blood transplant patients
and survivors, attorney referrals for
those having difficulty obtaining
reimbursement for their treatment,
and a patient-to-survivor
telephone link.
New York, NY 10038
PHONE: 800-465-4837
WEB: www.liverfoundation.org/
education/info/transplant
Facilitates, advocates and promotes
education, support and research for
the prevention, treatment and cure of
liver disease. Site includes information
on liver disease and links to local
chapters.
Caitlin Raymond Intl Registry
American Organ Transplant
Association
Candlelighters Childhood
Cancer Foundation
21175 Tomball Parkway #194
Houston, TX 77070
PHONE: 713-344-2402
WEB: www.aotaonline.org
Provides assistance to transplant
recipients and their families, including
airfare and bus tickets, advice on fund
raising and establishing funds.
Bone Marrow
Transplantation:
Medlineplus.gov
bonemarrowtransplantation.html
Links to information on bone marrow
transplantation.
Transplant & Donor Programs
American Bone Marrow Donor Registry
UMass Memorial Medical Center
55 Lake Avenue, North
Worchester, MA 01655
PHONE : 800-726-2824
WEB: www.crir.org
Assists those with leukemia, aplastic
anemia and other blood-related
disorders in finding compatible bone
marrow donors.
P.O. Box 2277
Portland, OR 97208
PHONE: 503-235-5722
Programs and services to families of
children and adolescents with cancer
across the U.S. Local affiliates provide
the direct support to families. Help is
available for the high cost of bone and
stem cell transplants.
Support Services
27023 McBean Parkway #126
Valencia, CA 91355
PHONE: 877-679-8256
Dedicated to serving the emotional,
educational, and financial needs of
families coping with childhood liver
disease and transplantation.
Resources include an online
newsletter and library.
Children’s Organ
Transplant Association
2501 Cota Street
Bloomington, IN 47403
PHONE: 800-366-2682
WEB: www.cota.org
Support and financial assistance to
children who need an organ and tissue,
including bone marrow, transplant.
Provides guidance to families and
communities with transplant-needy
individuals to raise the necessary
funds for the transplants. Negotiates
with hospitals and transplant centers
on behalf of patients. Will send a
representative at no cost into the
individual’s community to initiate and
organize fundraising activities.
All the statistics
in the world can’t
measure the
warmth of a smile.
-Chris Hart
Fred Hutchinson Cancer
Research Center
Bone Marrow and Stem Cell
Transplantation Information
1100 Fairview Ave
Seattle, WA 98109
PHONE: 800-804-8824
WEB: www.fhcrc.org
A comprehensive, clinical, and
consortium cancer center.
My Friends Care
Bone Marrow Transplant Fund
148 S. Main Street
Mount Clemens, MI 48043
PHONE: 586-783-7390
WEB: www.myfriendscare.org
Expertise and support for individuals to
raise funds for bone marrow transplants
and/or donor recruitment and searches.
National Bone Marrow
Transplant Link
20411 W 12 Mile Road, Suite 108
Southfield, MI 48076
PHONE: 800-546-5268
WEB: nbmtlink.org
Support for those affected by bone
marrow transplantation and promote
public understanding.
National Foundation
for Transplants
1102 Brookfield, Suite 200
Memphis, TN 38119
PHONE: 800-489-3863, or 901-684-1697
WEB: www.transplants.org
Financial assistance nationwide for
bone marrow, stem cell, and cord blood
patients for transplant-related care/
medication.
National Marrow
Donor Program
3001 Broadway Street NE, Ste 500
Minneapolis, MN 55413-1753
PHONE: 800-627-7692
WEB: www.marrow.org/index.html
Facilitates life-saving blood stem
cell transplants for patients who do
not have a donor in their family. They
provide the products and services that
bring patients and donors together
through life-saving technology, manage
a large registry of volunteer stem cell
donors and cord blood units, work
to increase access to transplantation
through research, advocacy, and public
and professional education.
National Transplant
Assistance Fund
3475 Westchester Pike, Ste. 230
Newton Square, PA 19073
PHONE: 800-642-8399
WEB: www.transplantfund.org
Offers resources serving all organ and
tissue transplant patients, their families
and the professional community who
treats them. Provides educational
information, fund-raising expertise for
families raising money for transplants,
and financial support to patients
through medical assistance grants.
types/childhood/care/surgery.html
Links to information on bone marrow
and stem cell transplantation in children
with cancer.
Oakland Children’s Hospital
in California
Blood and Marrow
Transplant Program
747 52nd Street
Oakland, CA 94609
PHONE: 510-428- 3374
WEB: www.childrenshospitaloakland.org
Offers a free newsletter full of
information relating to BMT
and stem-cell transplants.
Organ Transplantation:
MedlinePlus.gov
organtransplantation.html
Links to information on organ
transplantation. The organs that can be
transplanted include: Heart, Intestine,
Kidney, Liver, Lung, Pancreas. Click on
each organ to go to a separate page on
transplant of the specific organ.
United Network
for Organ Sharing
PHONE: 888-894-6361
WEB: www.unos.org
Maintains, updates, and provides
transplantation and donation
information to patients, family members,
friends, potential donors and medical
professionals. Information may be
requested on topics such as: the
transplantation and donation process;
national and center-specific transplant
survival rates; Organ Procurement
Organization recovery rates; number of
transplants by organ at each transplant
center. Offers patient information kits
to assist patients, family members
and friends in making informed and
knowledgeable decisions about organ
transplantation.
World Children’s
Transplant Fund
12811 Foothill Blvd,
Sylmar, CA 91342
PHONE: 818-365-1455
WEB: www.wctf.org/
Works to provide as many opportunities
as possible for lifesaving pediatric
transplant surgery to the children
of the world.
Transplantation in
Children with Cancer:
NOAH
Parents Guide
to Cord Blood Banks
WEB: parentsguidecordblood.com
Provides an impartial review of cord
blood storage options for parents who
are contemplating this form of medical
“insurance”. Parents Guide to Cord Blood
Banks review the medical motivations
for banking umbilical cord blood and the
difference between donating to a public
bank versus private banking. Master
lists of both public and private banks
are provided. For private banks, a guide
to evaluating services in the form of a
questionnaire is provided.
Transplant Recipients
International Organization
2117 L Street, NW, #353
PHONE: 800-TRIO-386
WEB: www.trioweb.org
Provides educational materials regarding
transplantation, donor awareness,
financial and insurance issues relevant
to transplants. Provides educational
scholarships; has a toll free telephone
support network which links candidates,
recipients and their families to peer
interaction; publishes LifeLines, a bimonthly newsletter available on-line,
composed of articles and information
about donation and transplantation; and
hosts annual conference.
Home Care
Resources regarding home care, assistive equipment, home nursing,
respite care, care-giving support, and related services.
Abledata
When we truly
care for ourselves,
it becomes
possible to
care far more
profoundly about
other people.
-Eda Leshan
Caregiver Survival Resources
PHONE: 800-227-0216
TTY: 301-608-8912
Information on thousands of assistive
devices for home health care, from
eating utensils to wheelchairs, prices,
names, and addresses of suppliers.
6365 Taft St., Suite 3003
Hollywood, FL 33024
PHONE: 954-893-0550
FAX: 954-893-1779
WEB: www.caregiver911.com
A comprehensive list linking caregiving
information and services for general
issues and specific chronic illnesses.
American Association for
Homecare
P.O. Box 1206,
Charlestown, RI 02813
PHONE: 401-364-9100
FAX: 401-364-9933
EMAIL: Inquiries@
caregiversmarketplace.com
WEB: www.caregiversmarketplace.
com/contact.cfm
Links to information and products for
home care.
625 Slaters Lane, #200
PHONE: 703-836-6263
WEB: www.aahomecare.org
Represents the home medical
equipment and homecare industries.
Cancer Care, Inc.
275 7th Avenue
New York, NY 10001
PHONE: 800-813-4673
FAX: 212-719-0263
Group, individual, family, and
bereavement counseling (in person,
online and through telephone).
Information and referral to local
community resources. Supplementary
financial assistance for home care,
transportation, and pain medication.
Caregivers Group, Inc., The
Caregivers-USA
WEB: www.caregivers-usa.org
Free, nationwide database that puts
you in touch with more than 40,000
caregiving and caregiver support
services nationwide.
Center for Family Caregivers
P.O. Box 224, Park Ridge IL 60068
PHONE: 773-334-5794
WEB: www.familycaregivers.org
Helps family members learn about
care-giving through “Kits for
caregivers” program, and ten online
support groups and weekly free
tele-classes. The Center also
will develop and implement
at-home work opportunities for
family caregivers.
CureSearch
P.O. Box 60012
Arcadia, CA 91066-6012
PHONE: 800-458-6223, ext. 196
WEB: www.curesearch.
org/parentsfamilies/
beyondtreatment/endoflife
Provides resources and
techniques to help in this most
difficult of times when the focus
is on providing both physical
and emotional comfort to a child
and their family, and discovering
ways to preserve their dignity
and memory. Links include:
palliative care, hospice, talking
with your child.
WEB: www.efmoody.com/longterm/
respitechecklist.html
Respite caregiver’s checklist.
National Alliance for
Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
WEB: www.caregiving.org
Support to family caregivers and the
professionals who help them and to
increases public awareness of issues
facing family caregivers. Topics include:
reports and products, resources, tips,
events and links.
National Association
for Home Care
228 Seventh St. SE
PHONE: 202-547-7424
FAX: 202-547-3540
WEB: www.nahc.org
Information on home care and
hospice. Offers referrals to local
bereavement support groups in your
area. Publications available.
National Family
Caregivers’ Association
10400 Connecticut Ave #500
Kensington, MD 20895-3944
PHONE: 800-896-3650
FAX: 301-942-2302
WEB: www.nfcacares.org
Education, support, respite care
and advocacy for caregivers. Their
toll free information line provides
referrals to caregiver support groups
and a resource guide. Distributes a
newsletter with practical tips on care
giving.
Pediatric Services of America
310 Technology Parkway
Norcross, GA 30092
PHONE: 800-950-1580
WEB: www.psakids.com
Services designed to comprehensively
address the full range of home health
care needs of pediatric patients,
particularly the needs of medically
fragile children dependent upon
sophisticated nursing care and medical
technology.
Home Care
E. F. Moody
Quality Care
National Resource Center
2 Copley Place, Suite 200
Boston, MA 02116
PHONE: 800-645-3633
Provider of home nursing services.
Operates toll-free telephone line that
provides information about home
care and related services such as
home nursing services, hospice, skilled
nursing, rehabilitation facilities, and
homemaker services throughout the
United States. Can provide referral
information for these services and
specialty programs for cancer patients.
Visiting Nurse Association
of America
99 Summer St., Ste. 1700
Boston, MA 02110
PHONE : 800-426-2547
WEB: www.vnaa.org
Provides callers with names of local
visiting nurse associations. More
that 500 nonprofit visiting nurse
associations provide community-based
home care services, including skilled
nurses, therapists, and home health
care aids.
Oley Foundation
214 Hun Memorial, A-28
Albany Medical Center
Albany, NY 12208-3478
PHONE: 800-776-OLEY
WEB: www.c4isr.com/oley
Provides up-to-date information,
outreach services, conference
activities, and emotional support
for consumers with the inability to
swallow food, their families, caregivers
and professionals.
Reference & Accreditation
Online resources that help you research doctors, facilities, medicines,
medical terms, and lab tests.
AMA Doctor Finder
WEB: webapps.ama-assn.org/
doctorfinder/html/patient.html
Professional information about
virtually every licensed physician in the
United States.
American Pediatric Surgical
Association
60 Revere Drive, Suite 500
Northbrook, IL 60062
PHONE: 847-480-9576
FAX: 847-480-9282
WEB: www.eapsa.org
Information on pediatric surgeons.
Best Doctors
In the face of
uncertainty, there
is nothing wrong
with hope.
-Bernie S. Siegel
WEB: www.bestdoctors.com
Answers from world-renowned doctors
to help people be sure they have the
right care. Ensuring that individuals
have the right diagnosis and the right
treatment can significantly improve
the quality of care.
Cancer 411
15303 Ventura Blvd.
Sherman Oaks, CA 91403
PHONE: 877-CANCR411
WEB: www.cancer411.org
Puts cancer patients, their families
and doctors in touch with the critical
information they need as quickly as
possible.
Cure Research Foundation
P.O. Box 3782
Westlake Village, CA 91359
PHONE: 805 498-0185
WEB: www.cancure.org
Dedicated to the advancement of
healing without drugs. Has a directory
of alternative clinics.
Castle Connolly
WEB: www.castleconnolly.com
Healthcare research and information
company founded in 1991 by a former
medical college board chairman and
president, Castle Connolly’s goal is to
help guide consumers to America’s top
doctors and top hospitals.
Commission on Cancer
WEB: www.facs.org/cancerprogram/
index.html
Consortium of professional
organizations dedicated to improving
survival and quality of life for cancer
patients through standard-setting,
prevention, research, education, and
the monitoring of comprehensive
quality care. Includes program
accreditation and education.
DocFinder
WEB: www.DocBoard.org
Contains the licensing background and
disciplinary information of physicians
and other health care practitioners
in addition to physician profile
information from states that have
passed physician profile laws.
ECureMe.com
www.ecureme.com/eyellowpage/
hospitals/yellowpages_hosp_main.
asp
Find or research a hospital.
Healthgrades.com
www.healthgrades.com/find-adoctor
Search for or check on cancer doctor/
oncologist: when, where for wedical
school, training (residency), license
status, or disciplinary action.
One Renaissance Blvd
Oakbrook Terrace, IL 60181
PHONE : 630-792-5000
FAX: 630-792-5005
WEB: www.jcaho.org
This joint commission of the American
Hospital Association, American Medical
Assoc., College of Physicians, American
College of Surgeons and the American
Dental Assoc., establishes standards for
hospital care and accredits hospitals
that meet its standards. They can tell
you if a hospital is accredited.
Lab Tests Online
WEB: www.labtestsonline.org
A public resource on clinical lab testing
from the laboratory professionals who
do the testing.
Reference & Accredidation
Joint Commission on
Accreditation of Healthcare
Organizations
Medterms
WEB: www.Medterms.com
MedTerms medical dictionary is the
medical reference for MedicineNet.
com. Our doctors define difficult
medical language in easy-tounderstand explanations of over
16,000 medical terms.
RxList
WEB: www.rxlist.com
RxList is an online medical resource
dedicated to offering detailed and
current pharmaceutical information
on brand and generic drugs. Founded
by pharmacists in 1995, RxList is the
premier Internet Drug Index resource.
WebMD
WEB: www.Dr.WebMD.com
Quick reference of information about
physicians. The Physician Directory is
not intended as a tool for verifying the
credentials, qualifications, or abilities of
any physician contained therein.
Why Not the Best
WEB: www.whynotthebest.org
Answers for key measures of safety
and quality for nearly 4,500 hospitals
around the country.
US Hospital Finder
WEB: www.USHospitalFinder.com
information on over 6000 hospitals.
Find the nearest hospitals in your area.
You can then click on a hospital to get
its details (e.g. address, phone and
services) and directions.
Complementary & Alternative Medicine
A listing of groups that offer complementary and alternative therapy options for
cancer patients.
Alternative Health Consultant
Arthur C. Brown
Alternative Medicine
Homepage
Alternative Health
News Online
American Holistic
Medical Association
24564 Lincoln Ct. Suite 137
Farmington Hills, MI 48335
PHONE: 248-426-8450
FAX: 530-688-6627
WEB: www.alternative-cancer.net
Internet guide to alternative cancer
therapy, doctors, clinics and hospitals.
Reach out and
open the door that
no one thought
could be opened.
Life is behind it.
-Kelly Ann Rothaus
WEB: www.altmedicine.com
Clearinghouse for alternative,
complementary, and preventative
healthcare pages on the Internet.
Falk Library of the Health Sciences
University of Pittsburgh
Pittsburgh, PA 15261
WEB: www.pitt.edu/~cbw/altm.html
Jumpstation for sources of information
on unconventional, unorthodox,
unproven, complementary, innovative,
and integrative therapies.
23366 Commerce Park, Suite 101B
Beachwood, OH 44122
PHONE: 212-292-6644
WEB: www.holisticmedicine.org
Professional organization of holistic
health care practitioners, professional
and nonprofessional, health-related
organizations, businesses, and
interested individuals. The AHMA
supports research and educational
projects that promote holistic
medicine.
American Institute for Cancer
Research Development Office
1759 R Street NW
PHONE: 800-843-8114
WEB: www.aicr.org
Not only funds hundreds of research
projects on nutrition and cancer, but
also provides information to both
physicians and the general public.
Provides a variety of services: toll-free
nutrition hotline; series of consumer
seminars in 24 cities on reducing
cancer risk; a quarterly newsletter with
articles on research updates, health
tips, and nutrition ideas and recipes;
four seasonal cookbooks featuring
recipes from appetizers to desserts
that follow cancer risk-reduction
dietary guidelines; video on nutrition
and cancer; physician’s information
program that supplies doctors’ offices
with AICR educational booklets.
500 Davis Street, Suite 900
Evanston, IL 60201-4695
PHONE: 877-905-2700
FAX: 847-864-1178
WEB: www.amtamassage.org
Develops and advances the art, science
and practice of massage therapy in
a caring, professional and ethical
manner in order to promote the health
and welfare of humanity. AMTA’s Find
a Massage Therapist® national locator
service helps consumers and medical
professionals find qualified massage
therapist in their area.
Annie Appleseed Project
7319 Serrano Terrace
Delray Beach, FL 33446
PHONE: 561-749-0084
WEB: www.annieappleseedproject.org
Information, education, advocacy
and awareness on complementary,
alternative, and natural cancer
therapies. Website designed to
help consumers make more fully
informed decisions. Information is
for educational purposes and is not
meant to diagnose or treat any health
condition and is not a replacement for
treatment by a healthcare provider.
CanHelp P.O. Box 1678
Livingston, NJ 07039
PHONE: 800-364-2341
WEB: www.canhelp.com
Consultant for mainstream and
complementary therapies. Offers
a resource service for people with
cancer, which has been directed by
medical writer Patrick McGrady since
1983. Clients receive: a computer
printout of disease specific research
and treatment information from
medical databases, a personal
interpretation of this information,
medical reports, and synopses of
conversations concerning your case
with CanHelp’s medical advisors.
Fee for service. An initial telephone
consultation is free of charge.
Cancer Care
275 7th Avenue, Floor 22
New York, NY, 10001
PHONE: 800-813-4673
Basic information on alternative/
complementary cancer treatment with
links to books.
Cancer Recovery Foundation
PO Box 238
Hershey, PA 17033
PHONE: 800-238-6479
WEB: www.cancerrecovery.org
Cancer survival training programs
and self-study materials with specific
emphasis on body/mind/spirit
integration.
Cancer Research Institute
One Exchange Plaza
55 Broadway, Suite 1802
New York, NY 10006
PHONE: 800-992-2623
FAX: 212-832-9376
WEB: www.cancerresearch.org
Funds research on increasing the
body’s immune response to cancer
through the development of immune
response modifiers, monoclonial
antibodies, and vaccines. Also
publishes and distributes (free of
charge) Science Highlights, a quarterly
newsletter of new developments
in cancer, immunology, and AIDS.
Contains mostly conventional medical
news, although some unorthodox
treatments are also covered.
Complementary/Integrative
Medicine Education Resources
MD Anderson Cancer Center
1515 Holcombe Boulevard
Houston, TX 77030
PHONE: 877-632-6789
WEB: www.mdanderson.org/
departments/cimer
Dedicated to investigating the
effectiveness of alternative/
complementary therapies used for
cancer prevention and control. Offers
information and links to resources
related to alternative medicine use in
cancer patients.
Complementary & Alternative Medicine
American Massage
Therapy Association
CorStone Center
(formerly International Center for
Attitudinal Healing)
33 Buchanan Drive
Sausalito, CA 94965
PHONE: 415-331-6161
FAX: 415-331-4545
WEB: www.corstone.org
Designed to supplement traditional
healthcare and operates under the
premise that true healing has a
spiritual and emotional component
that must be addressed. Based on
nonsectarian spiritual principles;
programs enable individuals to let go
of the emotional pain and fear that
usually accompany illness or crisis,
and begin to lead a more fulfilling and
peaceful life.
Cure Research Foundation
P.O. Box 3782
PHONE: 805-498-0185
WEB: www.cancure.org
Dedicated to the advancement of
healing without drugs. Has a directory
of alternative clinics.
Linus Pauling Inst.
of Science and Medicine
Seek out that
particular mental
attribute which
makes you feel
most deeply and
vitally alive, along
with which comes
the inner voice
which says, “This
is the real me,”
and when you
have found that
attitude, follow it.
-William James
571 Weniger Hall
Corvallis, OR 97331-6512
PHONE: 541-737-5075
FAX: 541-737-5077
WEB: http://lpi.oregonstate.edu/
Extensive research on the use of vitamin
C and other nutrients in the treatment
and prevention of cancer and other
degenerative diseases. Also publishes a
quarterly newsletter and an extensive
array of research reports and booklets
on alternative treatments of disease and
preventive techniques.
National Center for
Complementary and
Alternative Medicine
P.O. Box 7923
Gaithersburg, MD 20898
PHONE: 888-644-6226
TTY: 866-464-3615
WEB: www.nccam.nih.gov
Information on alternative medicine,
including cancer treatments and
comfort management. Supports basic
and applied research and training
and disseminates information on
complementary and alternative
medicine to practitioners and the public.
Oasis of Hope
PHONE: 888-500-4673
FAX: 619-690-8410
WEB: www.oasisofhope.com
Resource to discover the benefits of
Contreras Care and how to prevent
illness with natural medicine (alternative
to surgery radiation and chemotherapy)
with emphasis on nutrition, raw food
diets, juicing and a healthy life style as
keys to preventing illness.
People Against Cancer
604 East Street
Otho, IA 50569
PHONE: 515-972-4444
FAX: 515-972-4415
WEB: www.peopleagainstcancer.net
Dedicated to protecting medical
freedom of choice for cancer therapy
options. Distributes literature of
alternative, non-toxic therapies, home
health care products, and counseling
services for those seeking guidance in
choosing alternative therapies.
Organizations that may offer support and help transcend cultural
and language barriers associated with medical care issues.
Association of
Cancer Online Resources
(ACOR)
173 Duane Street, Suite 3A
New York NY 10013-3334
PHONE: 212-226-5525
WEB: www.acor.org
Large collection of cancer-related
Internet mailing lists. Develops and
hosts state-of-the-art Internet-based
knowledge systems that allow the public
to find and use credible information
relevant to their illness. Available in
English, French, Italian, Portuguese,
Scandanavian, and Spanish.
Asian Liver Center at Stanford
University
300 Pasteur Drive, H3680
Stanford, CA 94305
PHONE: 888-311-3331
WEB: http://liver.stanford.edu
The center uses a three-pronged
approach towards fighting hepatitis
B through outreach, education, and
research. Specifically, the Asian Liver
Center spearheads educational outreach
and advocacy efforts in the areas of
hepatitis B and liver cancer prevention
and treatment, serves as a resource
for both the general public and health
practitioners, and implements clinical
and research programs. Chinese
Vietnamese, and Korean Languages.
Diversity Rx
WEB: www.diversityRX.org
Promotes language and cultural
competence to improve the quality of
health care for minority, immigrant, and
ethnically diverse communities. Topics
include where to get the basic facts and
more.
India Cancer
22, Alka, 15th Road,
Santacruz (W), Mumbai 400 054
PHONE: 91 22 32659895
WEB: www.indiacancer.org
A network of organization, cancer
centers, professionals, and volunteers
dedicated to the treatment of cancer.
Topics include: about cancer, treatment,
detection technology, cancer care,
cancer and lifestyle, children and cancer,
and specific cancers. Website India
Languages include: Telugu, Marathi and
Bengali.
Intercultural Resources
Intercultural Resources
Intercultural Cancer Council
Baylor College of Medicine
1709 Dryden Road, Suite #1025
Houston, TX 77030-3411
PHONE: 713-798-4617
WEB: www.iccnetwork.org
Dedicated to insure that all Americans,
particularly minorities, the medically
underserved, and cancer survivors have
facilitated access to the health care
system. Care includes cancer prevention,
detection, diagnosis, treatment,
rehabilitation, mental health, and
long-term care services.
International Union
Against Cancer
62 route de Frontenex
1207 Geneva, Switzerland
PHONE: 41 22 809 1811
WEB: www.uicc.org
Educates health professionals and
those who care for patients. Contact
information for other resources is
provided in an International Directory of
Cancer Institutes and Organizations.
Jacob’s Heart
2007 Freedom Blvd.
Freedom, CA 95019
PHONE: 831-724-9100
WEB: www.jacobsheart.org
Bilingual Family Services Coordinator
to consult with families or hospital
staff who are dealing with language
or cultural barriers. Translation and
information/referral services can be
provided in Spanish and English, as well
as nutritional information based on the
special needs of children with cancer.
Kids Health
WEB: www.kidshealth.org
Provides doctor-approved health
information about children from before
birth through adolescence. KidsHealth
has separate areas for kids, teens, and
parents - each with its own design, ageappropriate content, and tone. There are
literally thousands of in-depth features,
articles, animations, games, and
resources - all original and all developed
by experts in the health of children and
teens.
Max Foundation
A great life is the
sum total of all the
worthwhile things
you’ve been doing
one by one.
-Richard Bach
110 W. Dayton, Ste 205
Edmonds, WA 98020
PHONE: 888-462-9368
WEB: www.themaxfoundation.org
A nonprofit organization dedicated to
improve the quality of life and survival
rates of patients with leukemia and
other blood related diseases, especially
children of Hispanic and Latin American
origin. Provides information about
treatment options, as well as emotional
and economical support. Work to
establish the Latin American Bone
Marrow and Cord Blood Registry is
underway.
Mexican Association of Aid
to Children with Cancer
WEB: www.icccpo.org/articles/general/
amanc_1995.html
Offers integral support to the child
with cancer and relatives. Supply of
chemotherapy with all the oncological
drugs each child requires for the
period of treatment, lodging, meals,
transportation between the lodging
and hospital, phsychological support
to children and parents, education
support, assistance with prosthesis,
crutches, wheel chairs, recreational
support (trips, camps, shows), and
support for research.
National Alliance for Hispanic
Health
1510 Sixteenth Street NW
PHONE: 202-387-5000
WEB: www.hispanichealth.org
Provides access to information for
improving the health of the Hispanic
community. Cancer info also available.
Native American
Cancer Research
393 South Harlan Street, suite 125
Lakewood, CO 80226-3571
PHONE: 800-537-8295
FAX: 303-975-2463
WEB: www.natamcancer.org
Survival from breast cancer and the
quality of life after diagnosis for Native
American/First Nations breast cancer
patients and loved ones.
Cancer Information
en espanol
6116 Executive Boulevard, Room 3036A
PHONE: 800-422-6237
TTY: 800-332-8615
WEB: www.cancer.gov/espanol
General and specific information on
cancer written in Spanish.
Office of Minority Health
P.O. Box 37337,
Washington, D.C. 20013-7337
PHONE: 800-444-6472
FAX: 240-453-2883
WEB: www.omhrc.gov
Part of the Public Health Service, U.S.
Department of Health and Human
Services, serving: African-Americans,
Asian-Americans, Hispanic/Latinos,
American Indians, Alaskan Natives and
Pacific Islanders.
Aid & Assistance
Aid & Assistance
Cancer imposes heavy burdens on families. Many are
impacted and need help with jobs, money, or insurance
policies. Other than financial help, many also need
assistance with legal issues, air travel, ground transporation,
prescriptions and even financial aid for continuing
education. This section offers resources that may help with
a variety of needs and unique situations.
Aid & Assistance | 47
Financial Assistance
Financial difficulties are hard for everyone to acknowledge, especially during
times of crisis. These national organizations and resources may offer financial
assistance. Check with your local support organizations, churches, social
services as many have financial funds for local citizens in need. Families should
discuss any concerns with healthcare costs with their physician, medical social
worker, or the business office at your hospital or clinic. Depending on your
circumstance, hospitals can reduce bills and set up payment plans.
Aid Association for Lutherans
4321 North Ballard
Appleton, WI 54919
PHONE: 800-847-4836
WEB: www.aal.org
Local offices help families pay for
medical equipment, medical supplies,
and transportation to medical care.
1599 Clifton Rd, NE
Atlanta, GA 30329
PHONE: 800-227-2345
FAX: 404-325-2217
WEB: www.cancer.org
Local offices may offer reimbursement
for expenses related to cancer
treatment. May include reimbursement
for transportation, medicine, and
medical supplies. Offers programs that
help cancer patients, family members,
and friends cope with the emotional
challenges they face. Call the number
above for your local office.
American Kidney Fund
6110 Executive Blvd. Suite,
1010
Rockville, MD 20852
PHONE: 800-638-8299
FAX: 301-881-0898
EMAIL: helpline@
kidneyfund.org
WEB: www.kidneyfund.org
Provides direct financial aid
to needy kidney patients. It
also provides information
on organ donations and
kidney related diseases.
Some of the services
provided include: patient
grants, patient emergency
funds, children’s camp
grants, pharmacy programs
& equipment.
48 | Aid & Assistance
Association of Jewish Family
and Children’s Agencies Inc.
557 Cranbury Road, Suite 2
East Brunswick, NJ 08816-5419
PHONE: 800-634-7346
FAX: 732-432-7127
WEB: www.ajfca.org
Some 145 local member agencies may
provide help for medical equipment,
medical supplies, prescribed
medication, and transportation to
medical care.
Association of Junior Leagues
International, Inc.
New York, NY 10038-4609
PHONE: 212-951-8300
FAX: 212-481-7196
WEB: www.ajli.org/
Some local Junior Leagues may
provide financial assistance on a
special project basis. Contact your local
Junior League to see if it can help you.
You can find their telephone number
in the business section of the white
pages telephone directory, or you may
contact the international office.
Association of Maternal and
Child Health Programs
2030 M Street, NW, Suite 350
PHONE: 202-775-0436
FAX: 202-775-0061
WEB: www.amchp.org
Provides financial grants to states for
direct medical and related services for
children with disabilities, including
chronic and terminal illnesses. Every
state has its own plan. You can contact
this organization for information on
your child’s eligibility for services as
well as information on state specific
programs.
Cancer Coalition
9396 Richmond Avenue, Suite 307
Houston, TX
PHONE: 713-335-5677
WEB: www.burzynskipatientgroup.org
Provides grants to patients who can
no longer afford the treatment that is
helping them. Their goal is to ensure
that when a patient is responding to a
treatment—whether it be traditional,
alternative, or experimental—funds
are available if the patient no longer
can afford to continue paying for that
treatment. Provides grants to patients
for various aspects of care that health
insurance does not cover. They provide
assistance for people who are already
in a program but who might have to
quit the therapy because of a lack of
funds.
Cancer Fund of America
2901 Breezewood Lane
Knoxville, TN 37921-1099
PHONE: 800-578-5284
FAX: 865-938-2968
WEB: www.cfoa.org
Helps cancer patients, hospices, and
other non-profit healthcare providers
sending products free of charge
directly to them. Provides financial
assistance to families.
Cancer Survivors Fund
P.O. Box 792
Missouri City , TX 77459
PHONE: 281-437-7142
FAX: 281-437-9568
WEB: www.cancersurvivorsfund.org
Provide medical expense assistance for
the benefit of persons diagnosed with
cancer, receiving treatment for cancer
or in remission to give them a new
purpose and meaning in life.
Catholic Charities, U.S.A.
1731 King Street
PHONE: 703-549-1390
FAX: 703-549-1656
WEB: www.catholiccharitiesusa.org
Funds some medical care. Contact the
Catholic Charities nearest your home
to see what kind of assistance they can
provide. If you have trouble locating
your local Catholic Charities agency,
contact the national office.
Centers for Medicare &
Medicaid Services
7500 Security Blvd.
PHONE: 877-267-2323
TTY: 866-226-1819
WEB: www.cms.hhs.gov
Provides information on Medicare
and Medicare hospice benefits.
Cancer Care, Inc.
275 7th Ave
New York, NY 10001
PHONE: 800-813-4673
FAX: 212-719-0263
Range of support services to
cancer patients and their families,
free of charge. Supplementary
financial assistance for home care,
transportation, and pain medication.
Chai Lifeline
151 West 30th Street
New York, NY 10001
PHONE: 877-242-5433
WEB: www.chailifeline.org
Offers a large network of free health
support services that provide
invaluable practical, psychological and
emotional assistance for seriously ill
Jewish children and their families.
Support Services
25379 Wayne Mills Place, Suite 143
Valencia, CA 91355
PHONE: 877-679-8256
FAX: 661-263-9099
Provides financial aid for families of
pediatric liver patients. Typical types of
financial assistance include a parent’s
food allowance during their child’s
hospitalization, telephone service
for a child awaiting transplant, or
transportation expenses for a clinic
visit.
Civitan World Headquarters
P.O. Box 130744
Birmingham, Alabama 35213-0744
PHONE: 800-248-4826
WEB: www.civitan.org
Local chapters of this organization may
help families purchase prescription
medications, medical equipment,
and supplies for children with
mental retardation or developmental
disabilities. Civitan chapters are also
experienced in directing families to
other sources of financial help.
Council for Health and Human
Services Ministries
First Hand
Department of Social Services
General Grand Chapter,
Order of the Eastern Star
700 Prospect Avenue
Cleveland, OH 44115
PHONE: 866-822-8224 ext. 2250
WEB: www.chhsm.org
Makes referrals to sources of financial
assistance for medical care and
other needs.
PHONE: See your local phone directory
General assistance programs provide food,
housing, prescription drugs, and other
medical expenses for those who are not
eligible for other programs. Funds are
often limited. This number is found in the
local telephone directory. For complete
information on how DSS can help, refer to
“Other Sources of Financial Help” at the end
of this section.
Disabled Children’s Relief Fund
Hope is a journey,
not a destination;
its value lies in
the exploration.
Hope is the way
we live life and
the journey of
hope should last
until we end.
-Davis Kessler
P.O. Box 89, Freeport, NY 11520
PHONE: 516-377-1605
WEB: www.dcrf.com
Advocate for the rights and needs of
disabled children, including those
disabilities brought on by cancer
treatments and side effects. Provides cash
grants for children, with preference given to
families who do not have health insurance.
Disability Expert
WEB: www.thedisabilityexpert.com
Provides information about applying for
Social Security disability benefits.
Elks USA
2750 Lake View Avenue
Chicago, IL 60614
PHONE: 773-755-4700
WEB: www.elks.org
Local Elks lodges may
provide some help to
children with chronic
illnesses or disabilities.
Contact your local Elks
lodge to see if it funds
any medical help for
children or could be
encouraged by you to
do so.
2800 Rockcreek Parkway
Kansas City, MO 64117
Phone: 816.201.1569
WEB: www.cerner.com/firsthand/
Assists individual children with healthrelated needs when insurance and other
financial resources have been exhausted.
1618 New Hampshire Avenue, NW
PHONE: 202-667-4737
WEB: www.easternstar.org
State chapters may be approached to
do so. A state or local chapter could be
approached to set up a fund to provide
for medical equipment, medical supplies,
prescription medications, and/or medical
transportation for children with chronic
illnesses or disabilities who do not have a
way to pay for these needed items.
Income Tax Deductions
WEB: www.irs.ustreas.gov
Medical costs that are not covered by
insurance policies sometimes can be
deducted from annual income before
taxes. Examples of tax deductible expenses
might include mileage for trips to and
from medical appointments, out of pocket
costs for treatment, prescription drugs
or equipment, and the cost of meals
during lengthy medical visits. The local IRS
office, tax consultants, or certified public
accountants can determine medical costs
that are tax deductible. Your local IRS
office is available in your local telephone
directory.
Kelly Anne Dolan
Memorial Fund
602 S. Bethlehem Pike
Building D, 2nd Floor
Ambler, PA 19002
PHONE: 215-643-0763
WEB: www.kadmf.org
Resource center providing education,
advocacy, information and financial
assistance for the uninsured needs of
families caring for seriously ill and physically
challenged children.
Locks of Love
Knights of Columbus
Cancer Society
3636 Woodview Trace
Indianapolis, IN 46268-3196
PHONE: 800-549-2647
FAX: 317-879-0204
WEB: www.Kiwanis.org
Local clubs may have funding available.
Local clubs could also be encouraged to
establish a fund for emergency needs for
medical equipment, supplies, prescription
medications, and transportation for
local children with chronic illnesses or
disabilities. *ALSO IN MANY LANGUAGES
1 Columbus Plaza
New Haven, CT 06510-3326
PHONE: 203-752-4000
WEB: www.kofc.org
Families seeking financial assistance for
medical care for their children do not have
to be Catholic. Local chapter number can be
found in the business section of the white
pages or by contacting the National Office.
*ALSO IN MANY LANGUAGES
The Leukemia
& Lymphoma Society
1311 Mamaroneck Ave.
PHONE: 800-955-4572
WEB: www.leukemia-lymphoma.org
Offers financial aid to people who have
leukemia, non-Hodgkin’s lymphoma,
Hodgkin’s disease, or multiple myeloma
by aiding in the payments of uncovered
outpatient expenses, including drugs,
blood transfusions, and radiation. Callers
may request their booklet describing LSA’s
Patient Aid Program or the telephone
for their local office. *ALSO IN MANY
LANGUAGES
Lions Club International
300 W 22nd Street
Oak Brook, IL 60521-3137
PHONE: 630-571-5466
WEB: www.lionsclubs.org/EN/content/
lions_lcif.shtml
Local chapters can help provide eye care,
with a priority given to visual impairments.
Some chapters provide at no cost to
qualified applicants eye examinations,
eyeglasses, prescription eye medications,
artificial eyes, emergency hospital care, and
surgery and hospital fees as funds permit.
234 Southern Blvd.
West Palm Beach, FL 33405
PHONE: 888-896-1588
WEB: www.locksoflove.org
Provides hairpieces to financially
disadvantaged children suffering from
long-term (permanent) medical hair loss.
Hairpieces are provided free of charge or
on a sliding scale, based on financial need.
All applicants must complete a nomination
application, available on the Locks of Love
web site, or via “snail mail.”
One South Memorial Drive, Suite 800
St. Louis, MO 63102
PHONE: 800-532-6459
Helps children with cancer and their
families by providing financial and
fundraising assistance related to medical
treatment such as lodging and travel.
Provides advocacy support interceding
on behalf of children with bills, home care
needs, insurance companies, hospitals, and
other agencies to negotiate reasonable
financial solutions for a child’s care. Support
services and education about childhood
cancer and nutrition is available as well.
Kiwanis International
National Coalition
of Hispanic Health
1501 16th Street NW
PHONE: 202-387-5000
WEB: www.hispanichealth.org
Refers families to local resources in their
community.
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001
PHONE: 800-424-2634
FAX: 212-328-3777
WEB: www.hemophilia.org
Has emergency assistance funds that can
pay for medical expenses (e.g., prescribed
medication, wheelchair repair). References
to other resources of financial aid that may
be available for your particular situation.
National Patient
Advocate Foundation
700 Thimble Shoals Blvd, Suite 201
Newport News, VA 23606
PHONE: 800-532-5274
FAX: 757-873-8999
WEB: www.patientadvocate.org
Provides patients, their families and
their advocates with current information
concerning ongoing legislative and
policy reform in congress. Creates
avenues of access to insurance funding
or evolving therapies, therapeutic agents
and devices for cancer patients.
Office of Minority Health
You don’t develop
courage by being
happy in your
relationships every
day. You develop
it by surviving
difficult times
and challenging
adversity.
-Epicurus
PO. Box 37337
Washington, D.C. 20013-7337
PHONE: 800-444-6472
FAX: 301-251-2160
WEB: www.omhrc.gov/omhrc
Offers a source of information about
financial assistance for education
programs after high school, including
special financial assistance programs for
individuals with disabilities.
Paying the Bills
101 Tremont Street, Suite 812
Boston, MA 02108
PHONE: 617-574-9493
WEB: www.neserve.org
Written by parents who have children
with special needs. Offers numerous
tips for families on financing health care
for children with special needs. Authors
have tapped their own experiences,
as well as those of
other families and
professionals, in order to
share information and
techniques for getting
payment for children’s
health care.
Ruritan National
P.O. Box 487, Dublin, VA 24984
PHONE: 877-787-8727
WEB: www.ruritan.org
Local clubs help families pay for medical
equipment and supplies, prescription
medications, and medical transportation.
Check the business section of your white
pages directory or contact the national
office to get a listing for your local club.
Salvation Army National
Headquarters
615 Slaters Lane, P.O. Box 269
PHONE: 703-684-5500
WEB: www.salvationarmyusa.org
Local units can offer emergency financial
assistance to families. You can find a local
office in the business section of your
local white pages, or by contacting the
national office.
Shrine of North America
and Shriners Hospitals for
Crippled Children
P.O. Box 31356
2900 Rocky Point Drive
Tampa, FL 33607-1460
PHONE: 800-237-5055
WEB: www.shrinershq.org
Provides free care to children with
orthopedic problems or burns. Does not
offer direct financial help for outpatient
medications or medical transportation.
Sick Kids Need Involved People
213 West 35th Street, 11th Floor
New York, NY 10001
PHONE: 212-268-5999
WEB: www.skipofny.org
Provides information on case
management, locating financial aid, and
advocacy services to families of children
with complex health care needs. Serves
NY area.
Social Security
Administration
6401 Security Blvd.,
PHONE: 800-772-1213
TTY: 800-325-0778
WEB: www.ssa.gov
Provides monthly income for eligible
individuals. Some states acknowledge
cancer needs. Information on Medicare
available by calling your local office for
details and availability. For complete
information on how SSA can help.
Special Love, Inc.
St. Jude Children’s Hospital
262 Danny Thomas Place
Memphis, TN 38105
PHONE: 901-595-3300
WEB: www.stjude.org
Offers free treatment, travel, and
lodging for eligible children diagnosed
with cancer. Parents wishing to
have their child treated at St. Jude
Hospital must have the child’s treating
oncologist contact a St. Jude Hospital
physician. Final acceptance occurs
when the patient is deemed eligible
and is enrolled in a specific protocol.
Traveler’s Aid International
1612 K Street NW, Ste 206
PHONE: 202-546-1127
WEB: www.travelersaid.org/
Local agencies help individuals and
families in crisis; however, only shortterm crisis intervention is available. This
could include a situation in which a
child had a medical emergency.
Wheelchair Foundation
3820 Blackhawk Road
Danville, CA 94506
PHONE: 877-378-3839
WEB: www.wheelchairfoundation.org
The Wheelchair Foundation is a
nonprofit organization leading
an international effort to deliver a
wheelchair to every man, woman and
child in the world who needs one.
Wigs for Kids
21330 Center Ridge Road, Suite 26
Rocky River, OH 44116
PHONE: 440-333-4433
WEB: www.wigsforkids.org
Nonprofit organization supplies wigs
to children under 18 who can’t afford
hairpieces and are experiencing hair
loss from chemotherapy, radiation,
burns, alopecia or other medical
conditions. Contact the above address
for an application, and ask your child’s
oncologist or social worker to verify
need. When the wig is finished, a local
hair salon can be requested to donate
time for the final fitting.
PHONE: 888-930-2707
Offers college scholarships for kids
with cancer and emergency funds for
families in need.
United Methodist Association of
Health and Welfare Ministries
407-B Corporate Center Dr
Vandalia, OH 45377
PHONE: 800-411-9901
WEB: www.umassociation.org
Member organizations may provide
services, including medical and related
care at reduced or negotiated rates.
Uniformed Service
Organization
2111 Wilson Boulevard, Suite 1200,
Arlington, VA 22201
PHONE: 888-484-3876
WEB: www.uso.org
International organization does not
offer direct financial aid of any kind. For
active duty service personnel, however,
local USO organizations sponsor family
and community centers to help families
on a crisis intervention basis.
Emergency & Temporary Cash
Public and private programs designed to provide prompt help to
individuals or families in need. Their assistance can include cash,
paying for prescription drugs and/or utility bills, and providing rent
deposits, food, clothing, and shelter. Your hospital social worker may
also be able to help.
Aid to Families
with Dependent Children
Enthusiasm is
everything. It must
be taut and vibrating
like a guitar string.
-Pele
A joint federal and state funded
program that offers monthly checks
for the care of dependent children
who are in financial need because
their parent(s) cannot provide them
with needed financial support.
There is a requirement that most
AFDC recipients participate in the
JOBS program or attend educational
activities, unless they meet one of
the following requirements: parent is
ill, has disabilities, or is taking care of
someone in the home who is ill or has
a disability, or they are the primary
caregiver of children younger than 1-3
years of age (each state has different
rules about this).To apply for AFDC, call
your county’s Department of Human
Resources (DHR)/Social Services (DSS).
Your local information operator will
have the telephone number.
Food Stamp Program
Coupons or “food stamps” are issued
monthly to qualified low income
individuals and families to help them
purchase food. Contact your local
Department of Human Resources
(DHR)/Social Services (DSS). Your local
information operator will have the
telephone number.
Local Department of Human
Resources and Social Services
Each county’s Department of Human
Resources (DHR)/Social Services (DSS)
has an office or an individual to handle
requests for emergency assistance.
Can assist with the following: rent
deposits or monthly payments, moving
expenses, payment of utility bills,
financial help towards prescriptions
and medical supplies. DHR/DSS phone
number is in the county government
section of your telephone directory.
State and Local General
Assistance Programs
Designed to provide small amounts
of cash assistance to individuals who
are not eligible for AFDC or SSI, or who
are awaiting enrollment in another
income subsidy program. General
Assistance Programs are available to
those in need who cannot qualify for
other income assistance. Applicants
must demonstrate the following: That
they have applied to the SSI Program
and AFDC and have been denied or are
waiting for word about their eligibility
That they meet the low income
guidelines for a particular GA program
That the value of their “assets” or
personal possessions (e.g., furniture,
clothing) does not exceed a particular
GA program’s limit. The Department
of Human Resources/Social Services
can tell you if your state has a General
Assistance Program and how to apply.
You can find the telephone number of
your county’s DHR/DSS in the county
government section of your local
telephone directory.
Fundraising is another option to consider. Some families find
that friends, family and community members are willing to
contribute financially to a local fundraising effort if they are
aware of a difficult situation.
Children’s Organ
Transplant Association
2501 Cota Street
Bloomington, IN 47403
PHONE: 800-366-2682
WEB: www.cota.org
Provides guidance to families and
communities with transplant-needy
individuals to raise the necessary
funds for the transplants. Negotiates
with hospitals and transplant centers
on behalf of patients. Will send a
representative at no cost into the
individual’s community to initiate and
organize fundraising activities.
Cancer Society
One South Memorial Drive, Suite 800,
St. Louis, MO 63102
PHONE: 800-532-6459
Provides financial and fundraising
assistance related to medical treatment
such as lodging and travel. Provides
advocacy support interceding on
behalf of children with bills, home care
needs, insurance companies, hospitals,
and other agencies to negotiate
reasonable financial solutions for
a child’s care. Support services and
education about childhood cancer and
nutrition is available as well.
National Transplant
Assistance Fund
150 N. Radnor Chester Road
Suite F-120
Radnor, PA 19087
PHONE: 800-642-8399
WEB: www.transplantfund.org
Helps patients and their families
organize, launch and sustain grassroots
fundraising campaigns, providing fiscal
accountability for the funds raised and
weekly disbursements for life-saving
and life-sustaining medical care.
Fundraising
Sparrow Clubs, USA
906 NE Greenwood, Suite 2
Bend, OR 97701
PHONE: 541-312-8630
WEB: www.sparrowclubs.org
Does not fund individuals, but will
provide help to organized groups that
help people with medical needs, such
as schools and churches.
Employment & Legal Assistance
For various reasons families may need to consult legal counsel or employment
agencies during or after a child’s battle with cancer.
Cancer and Careers
WEB: www.cancerandcareers.org
Helps women, their employers, coworkers
and caregivers deal with cancer: strategically,
knowledgeably, and effectively, with the
right tools.
Disability Expert
EMAIL:
[email protected]
WEB: www.thedisabilityexpert.com
Provides information about applying for
Social Security disability benefits.
Job Accommodation Network
There is more in us
than we know. If we
can be made to see
it, perhaps, for the
rest of our lives, we
will be unwilling to
settle for less.
-Kurt Hahn
PO Box 6080
Morgantown, WV 26506-6080
PHONE: 800-526-7234
TTY : 877-781-9403
WEB: www.jan.wvu.edu
Facilitates the employment and retention
of workers with disabilities by providing
employers, employment providers, people
with disabilities, their family members and
other interested parties with information on
job accommodations, self-employment and
small business opportunities and related
subjects.
National Council
Against Health Fraud
Loma Linda University
119 Foster Street, Peabody, MA 01960
PHONE: 978-532-9383
WEB: www.ncahf.org
Investigates and evaluates claims made for
controversial health practices, products, and
services. Educates consumers, professionals,
legislators, and health agencies about health
misinformation, fraud, and quackery.
National Legal Aid
& Defender Association
1140 Connecticut Ave. NW, Suite 900,
PHONE: 202-452-0620
WEB: www.nlada.org
Advocate for front-line attorneys and other
equal justice professionals - those who
make a difference in the lives of low-income
clients and their families and communities.
Representing legal aid and defender
programs.
Quackwatch
WEB: www.quackwatch.org
Combats health-related frauds, myths, fads,
and fallacies. Focuses on quackery-related
information that is difficult or impossible to
get elsewhere by a worldwide network of
volunteers and expert advisors. Activities
include: investigating questionable
claims, answering inquiries, distributing
publications, reporting illegal marketing,
generating consumer-protection lawsuits,
improving the quality of health information
on the Internet, and attacking misleading
advertising on the Internet. ALSO IN MANY
LANGUAGES.
U.S. Equal Employment
Opportunity Commission
131 M Street, NE
PHONE: 800-669-4000,
TTY: 800-669-6820
WEB: www.eeoc.gov
The U.S. Equal Employment Opportunity
Commission enforces employment laws
and provides oversight and coordination of
all federal equal employment opportunity
regulations, practices, and policies. ALSO IN
MANY LANGUAGES.
U.S. Department of Labor
Frances Perkins Building
200 Constitution Avenue, NW
PHONE: 866-487-2365
TTY: 877-889-5627
WEB: www.dol.gov
Fosters and promotes the welfare of the job
seekers, wage earners, and retirees of the
United States by improving their working
conditions, advancing their opportunities
for profitable employment, protecting their
retirement and health care benefits, helping
employers find workers, strengthening free
collective bargaining, and tracking changes
in employment, prices, and other national
economic measurements. Administers
a variety of Federal labor laws including
those that guarantee workers’ rights to
safe and healthful working conditions; a
minimum hourly wage and overtime pay;
freedom from employment discrimination;
unemployment insurance; and other income
support. ALSO IN MANY LANGUAGES.
The following organizations may offer assistance and information
about insurance issues and aid related directly to treatment needs.
American Health
Insurance Plans
Membership Department
601 Pennsylvania Avenue NW
South Building,Suite 500
PHONE: 202-778-3200
FAX: 202-331-7487
WEB: www.aahp.org
Insurance industry trade association that
will provide information on insurance
and health care issues.
BCBS Caring Program
for Children
225 N. Michigan Ave.
Chicago, IL 60601
PHONE: 312-440-6000
WEB: www.bcbs.com
Offers specially designed health benefit
program for low-income children. No
children can be turned down for medical
reasons. Does not pay for in-patient
services. Not available in all states.
Cancer Care Foundation
P.O. Box 3782
PHONE: 800-282-2873
WEB: www.cancure.org/financial_
assistance.htm
Dedicated to the advancement of healing
without drugs. Special focus on cancer
but cover other health disorders as well.
As funding permits, offers counseling
services for other medical conditions.
Candlelighter’s Childhood
Cancer Foundation
PO Box 498
PHONE: 800-366-2223
Organization formed by parents of
young cancer patients. Helps families
their experiences. Can give information
on camps for children with cancer.
Has an ombudsman program to assist
Childhood Cancer
Ombudsman Program
c/o The Childhood Brain Tumor
Foundation
20312 Watkins Meadow Drive
Germantown, MD 20876
PHONE: 877-217-4166
WEB: www.childhoodbraintumor.org
Provides complaint investigation and
resolution for families of children with
cancer and adult survivors. Help is
given with health insurance analysis
and application, employment and
educational difficulties that may arise
during or after treatment. The Childhood
Cancer Ombudsman Program is a
project of The Childhood Brain Tumor
Foundation; you can contact them
through the Childhood Brain Tumor
Foundation.
Insurance
& Medical Assistance
Insurance & Medical Assistance
Children’s Health Insurance
Program Family Voices
2340 Alamo SE, Ste 102
Albuquerque, NM 87106
PHONE: 888-835-5669
WEB: www.familyvoices.org
Resources, tips, brochures and a
newsletter, offering advocacy for
children’s health care needs.
Centers for Medicare and
Medicaid Services
7500 Security Blvd.
PHONE: 877-267-2323
TTY: 866-226-1819
WEB: www.cms.hhs.gov
Provides information on Medicare and
Medicare hospice benefits.
Children’s Health Matters
Catholic Charities USA
1731 King Street, Alexandria, VA 22314
PHONE: 703-549-1390
WEB: www.catholiccharitiesusa.org
Seven Catholic organizations have joined
together to help eligible families obtain
health insurance. Committed to ensuring
that children have health coverage and
access to quality medical care.
Department of Health and
Human Services
Inspector General Hotline
Office of the Inspector General
PO Box 23489
PHONE: 800-447-8477
TTY: 800-377-4950
WEB: www.oig.hhs.gov/fraud/hotline/
U.S. government hotline for complaints
regarding Medicare or Medicaid;
provides assistance with issues of
entitlements, benefits, insurance, and
community resources.
First Hand Foundation
2800 Rockcreek Parkway
PHONE: 816-201-1569
WEB: www.firsthandfoundation.org
First Hand is a philanthropic, nonprofit
foundation established to help children
with health problems address financial
situations and their healthcare.
Courage is very
important. Like
muscle, it is
strengthened
by use.
-Ruth Gordon
Health Insurance
Association of America
601 Pennsylvania Avenue NW
South Building,Suite 500
PHONE: 202-778-3200
WEB: www.hiaa.org
Offers assistance to people with a history
of cancer in locating health insurance.
Hill-Burton Care Program
5600 Fishers Lane, Room 7-47
Rockville, MD 20857
PHONE: 800-638-0742
WEB: www.hrsa.gov/hillburton/
A program through which hospitals
receive construction funds from the
Federal Government. Hospitals that
receive Hill-Burton funds are required
by law to provide some services to
people who cannot afford to pay their
hospitalization.
Insure Kids Now
PHONE: 877-543-7669
WEB: www.insurekidsnow.gov/
National campaign to link the nation’s 10
million uninsured children--from birth
to age 18--to free and low-cost health
insurance. Puts families in direct contact
with their own state’s children’s health
insurance program through this website.
Medical Information
Bureau Incorporated
50 Braintree Hill Park, Suite 400
Braintree, MA 02184-8734
PHONE: 866-692-6901
TTY: 866-346-3642
WEB: www.mib.com
Can send a copy of your medical records
so that you can verify the information in
them and correct any inaccuracies. Call
MIB to find out the type of information
needed to process your request.
National Association of
Insurance Commissioners
2301 McGee Street, Suite 800
Kansas City, MO 64108-2662
PHONE: 866-470-6242
WEB: www.naic.org
Offers help with situations in
which you feel you or your family
are not being treated fairly by
your insurance carrier.
National Patient
Advocate Foundation
725 15th St. NW, Tenth Floor
Washington DC, 20005
PHONE: 202-347-8009
WEB: www.npaf.org
Provides legal consulting and
referral services for patients
confronting denial of insurance
coverage, employment
discrimination and/or need for
negotiating support with public
assistance programs through
both state and federal agencies
through their National Legal
Resource Network.
The cost of paying for medications can create a hardship.
The following two sections (1) Organizations and (2) Pharmaceutical
Manufacturers may have resources and programs to help pay
for prescription drugs. Call, check websites or email to obtain
applications and information. Amounts and eligibility will vary
from program to program. Check with your oncologist for a
pharmaceutical listing of your child’s medications.
Organizations
Centers for Medicare & Medicaid
Services
7500 Security Boulevard
PHONE: 800-633-4227
TTY: 877-486-2048
WEB: www.medicare.gov/pdphome.asp
Information on public and private programs
that offer discounted or free medication,
programs that provide help with other health
care costs, and Medicare health plans that
include prescription coverage. Provides
information on ways to reduce prescription
drug costs, such as using generic alternatives
and Medicare-approved drug discount cards.
Cost Containment
Research Institute
WEB: www.institute-dc.org
Tips, tools and tactics on how and where to
get free and low cost prescription drugs.
Health Resources
and Services Administration
Pharmacy Services
Support Center
US Dept. of Health and Human Services
5600 Fishers Lane
Rockville, MD 20857
PHONE: 800-628-6297
WEB: www.hrsa.gov/opa/links.htm
Links to patient assistance programs,
pharmaceutical companies and safety net
providers that offer prescription assistance
for low-income patients.
Leukemia &
Lymphoma Society
Prescription Assistance
1311 Mamaroneck Ave
Whiteplains, NY 10605
PHONE: 800-955-4572
FAX: 212-856-9686
WEB: www.leukemia-lymphoma.org
Offers financial assistance for drugs used in
care, treatment, and/or control of disease:
transfusing blood, transportation.
for Rare Disorders
Medication Assistance Programs
55 Kenosia Ave.
Donbury, CT 06813
PHONE: 800-999-6673
FAX: 203-798-2291
WEB: www.rarediseases.org/programs/
medication
Medication Assistance Program provides
assistance to uninsured or under-insured
individuals in securing life-saving and lifesustaining medications.
NeedyMeds, Inc.
P.O. Box 219
Gloucester, MA 01931
WEB: www.needymeds.org
Provides information about patient assistance
programs, which provide no cost prescription
medications to eligible participants.
Information also available in print form.
NeedyMeds cannot help individuals with
specific problems. The organization and
website are information sources only.
Pharmaceutical Research
and Manufacturers of America
(PhRMA)
Partnership for Prescription Assistance
950 F Street, NW, Suite 300
PHONE: 888-477-2669
WEB: www.pparx.org/Intro.php
Brings together America’s
pharmaceutical companies, doctors,
other health care providers, patient
advocacy organizations and community
groups to help qualifying patients who
lack prescription coverage get the
medicines they need through the public
or private program that’s right for them.
Offers a single point of access to more
than 475 public and private patient
assistance programs, including nearly
200 programs offered by pharmaceutical
companies.
RxAssist
Volunteers in Health Care
When one door of
happiness closes,
another opens; but
often we look so
long at the closed
door that we do
not see the one
which has opened
for us.
-Helen Keller
111 Brewster Street
Pawtucket, RI 02860
PHONE: 401-729-3284
FAX: 401-729-2955
WEB: www.rxassist.org
Search engine to locate Patient
Assistance Programs (PAP) that offer
free medication to patients in financial
need; downloadable information packet
for patients describing options for
prescription assistance.
RxHope
P.O. Box 5836
Somerset, NJ 08875
PHONE: 732-507-7400
FAX: 732-507-7600
WEB: www.rxhope.com
Helping hand to people in need of
obtaining critical medications that they
are unable to afford. Acts as advocate in
making the patient assistance program
journey easier and faster by supplying
vital information and help.
ScriptSave
WEB: www.scriptsave.com
Prescription drug saving program;
a discount card for numerous
participating pharmacies providing
savings through membership to
individuals without consideration of
income.
Pharmeceutical
Manufacturers
Many major pharmaceutical companies
have a drug assistance program for
patients. Call to obtain the applications
and information. Amounts and eligibility
will vary greatly from program to
program. Check with your oncologist for
a pharmaceutical listing of your child’s
medicines and the possibility of aid.
Reimbursements
The following listings are manufactures
who may offer reimbursements to
individuals whose insurance does not
cover their drugs or those who have
a high deductible. A representative
from the company will mail you an
application to determine if your child
is eligible. Call the hotline listed under
each manufacturer for complete
information. The following is a listing
of current programs developed by
pharmaceutical and related companies
and reimbursement specialists for
healthcare professionals, and in some
cases, patients.
Abbott Labs
PHONE: 800-255-5162 x4
WEB: www.abbott.com
Adria Laboratories
Adria Laboratories Patient
Assistance Program
PHONE: 800-366-5570
Amgen Inc.
Amgen Reimbursement Hotline
PHONE: 800-272-9376
WEB: www.amgen.com
AstraZeneca
Cancer Support Network
PHONE: 866-992-9276
WEB: www.astrazeneca-us.com
Baxter Bioscience
Reimbursement Hotline
PHONE: 800-548-4448
WEB: www.baxter.com
Bayer Corporation
PHONE: 888-842-2937
WEB: www.pharma.bayer.com
Boehringer Ingelheim
Phone: 800-556-8317
WEB: http://us.boehringer-ingelheim.
com/
Ortho McNeil
Chiron Therapeutics
Proctor & Gamble
Pharmaceuticals, Inc
Reimbursement Assistance Program
PHONE: 800-272-4878
WEB: www.bms.com/products/Pages
Reimbursement Hotline Services
PHONE: 800-775-753
WEB: www.chiron.com
Cytogen Corporation
PHONE: 800-833-3533
WEB: www.cytogen.com
Eli Lilly and Company
Patient Assistance Programs
Phone: 800-545-6962
WEB: www.lilly.com/responsibility/
programs/
Enzon
PHONE: 800-345-2252
WEB: www.enzon.com
Gemzar
PHONE: 866-472-8663
WEB: www.gemzar.com/pat/pat560_
reimbursement_support.jsp
GlaxoSmithKline
Patient Assistance Program
PHONE: 866-475-3678
WEB: www.gskforyou.com
Genentech Inc.
Genentech Reimbursement Hotline
PHONE: 866-422-2377
WEB: www.gene.com/gene/about/views/
pricing/patient-access.html
GE Healthcare
PHONE: 800-767-6664
WEB: www.gehealthcare.com
PHONE: 800-577-3788
WEB: www.ortho-mcneil.com/orthomcneil/company_pap.html
PHONE: 800-830-9049
WEB: www.pgpharma.com/patient_
assistance.shtml
Roche Laboratories
Patient Assistance Foundation
PHONE: 877-757-6243
WEB: www.rocheusa.com/programs/
patientassist.asp
Sanofi-Aventis US
PHONE: 800-221-4025
WEB: www.sanofi-aventis.us
Schering-Plough
PHONE: 800-521-7157
WEB: www.schering-plough.com/
responsibility/patient-assistance.aspx
Sigma-Tau Parmaceuticals, Inc.
PHONE: 800-490-3262
WEB: www.sigmatau.com/support.asp
Takeda Pharmaceuticals North
America
Reimbursement Hotline.
PHONE: 800-830-9159
WEB: www.tpna.com/responsibility/
patient_assistance_program.aspx
U.S. Bioscience (Neutrexin)
PHONE: 800-887-2467
WEB: www.aegis.com/factshts/network/
access/pa/trim.html
Wyeth
Janssen Pharmaceuticals Inc
Oncology Reimbursement Program
PHONE: 866-993-8466
WEB: www.wyeth.com/patientassistance
Merck
Infusion Pumps
PHONE: 800-526-7736
WEB: www.janssen.com/janssen/
PHONE: 800-727-5400
WEB: www.merck.com/merckhelps/
patientassistance/home.html
Novartis Pharmaceuticals
Corporation
Patient Assistance Foundation
PHONE: 800-277-2254
WEB: www.pharma.us.novartis.com/aboutus/our-patient-caregiver-resources/index.
jsp
Ortho Biotech Inc.
PHONE: 800-553-3851
WEB: www.orthobiotech.com
Bristol-Myers Squibb
Medtronic Neurological
Comprehensive Reimbursement
Assistance
PHONE: 800-328-0810, press 5
WEB: www.medtronic.com
Full service assistance. Prior authorization
service for infusion pump implants.
Smith Medical
Reimbursement Services
PHONE: 800-426-2448
WEB: www.smiths-medical.com
Provides assistance for customers,
healthcare professionals and a wide range
of other services, including legislative
lobbying for oncology reimbursement,
financial models for growth partnering,
billing seminars for branch offices and
professional associations.
Travel & Lodging Assistance
A listing of organizations that can provide asisstance with air
transportation, ground transportation and lodging.
Air Travel
A Wish with Wings
917 W. Sanford
Arlington, TX 76012
PHONE: 817-469-9474
WEB: www.awishwithwings.com/
aakids.htm
Provides transportation for medical
needs for children 18 years and under.
Transportation is provided for the
child, mother, and father. Organization
serves Texas only. The one-time service
is based on financial need.
Air Care Alliance
You cannot hold
back a good laugh
any more than
you can the tide.
Both are forces of
nature.
-William Rotsler
National Patient Air Transport Helpline
2060 State Highway 595
Lindrith, NM 87029
PHONE: 888-260-9707
WEB: www.aircareall.org
Nationwide league of humanitarian
flying organizations dedicated to
community service. Links you to
nationwide listings of organizations
that provide transport for patients and
sometimes family members needing to
get to treatment.
Air Charity Network
4620 Haygood Road, Suite 1
Viriginia Beach, VA 23455
PHONE: 877-621-7177
EMAIL: execdir@
aircharitynetwork.org
WEB: www.aircharitynetwork.
org/
Access for people in need
seeking free air transportation
to specialized health
care facilities or distant
destinations due to family,
community or national crisis.
American Airlines
Miles for Kids in Need
American Airlines,
Frequent Traveler Special Programs
MD 1394 P.O. Box 619616
Dallas/Fort Worth Airport,
TX 75261-9616
PHONE: 800-421-0600
Limited travel provided through
the Miles for Kids in Need program
for seriously ill children needing
emergency medical treatment or
special wishes. Special preference
is given to official charities, The
Starlight Foundation and Variety
Children’s Lifeline. Travel is awarded to
dependent children up to age 18 and
to two relatives or guardians who will
accompany the child. Financial need
must be certified by the requesting
organization.
Angel Flight, Inc.
1515 East 71st Street, Ste. 312
Tulsa, OK 74136
PHONE: 918-749-8992
WEB: www.angelflight.com
Provides non-emergency
transportation to medical treatment
to patients who cannot afford it, or
cannot fly on public transportation
for health reasons, or public
transportation is not readily available
in your area.
Angel Flight West
3161 Donald Douglas Loop South
Santa Monica, CA 90405
PHONE: 888-426-2643
WEB: www.angelflightwest.org
Flights serve a wide variety of needs.
All are intended for situations in
which the passenger cannot afford to
purchase commercial airline tickets,
or when travel by land or commercial
airline would be a physical hardship.
Other situations include, but are not
limited to, a compromised immune
system or living in a remote area
without access to commercial
transportation.
130 Edinburgh South Drive, Suite 203
Cary NC 27511
PHONE: 919-466-8593
FAX 919-467-5299
WEB: www.childrensflightofhope.org
Provides free private air transportation to
and from medical facilities for critically ill
or injured children (with their families or
guardians) who, due to medical, financial,
or logistical reasons, are unable to travel
to their destinations by any other mode.
Highly qualified volunteer pilots operate
aircraft to transport children and their
families to and from medical facilities
throughout the eastern United States.
Children’s Angel Flight
4620 Haygood Road, Ste. 1
Virginia Beach, VA 23455
PHONE: 800-296-1217
FAX: 800-550-1767
WEB: www.angelflightchildren.org
Managing and coordinating no-cost
charitable child transport patient programs
on children who need access to medical
research centers and disease-specific
treatment programs. Offers links to other
cooperating health agencies.
Corporate Angel Network Program
Westchester County Airport
1 Loop Road
PHONE: 866-328-1313
FAX: 914-328-3938
WEB: www.corpangelnetwork.org
Finds available space on corporate jets for
cancer patients in need of transportation
for treatment, consultations, or checkups.
The service is free for the patient and the
one attendant or family member.
Lifeline Pilots
Suite 302, Byerly Terminal
Greater Peoria Regional Airport
6100 W. Dirksen Parkway,
Peoria, IL 61607
PHONE: 800-822-7972
FAX: 800-822-7969
WEB: www.lifelinepilots.org
Volunteer pilots who fly people in need
of medical care, or other compelling
need, to distant care centers or locations.
There is no charge for Lifeline Pilots
services. Requirements: Patients must be
ambulatory; Patients must be unable to
use other transportation; Patients must
have verifiable financial need; Requests
must be submitted by an agency, social
worker, doctor, medical personnel, or other
similarly qualified individual.
Make-A-Wish Foundation of
America
3550 North Central Avenue, Suite 300
Phoenix, Arizona 85012-2127
PHONE: 800-722-9474
FAX: 602-279-0855
WEB: www.wish.org
Organization assists in flight
accommodations with Continental Airlines
Care Force.
Mercy Med-Flights, Inc.
P.O. Box 2525
Banner Elk, NC 28604
PHONE: 800-781-2959
WEB: www.aircarelifeflights.com
Prompt, professional medical flight transfer.
Mercy Medical Airlift
4620 Haygood Road, Ste. 1
PHONE: 800-296-1217
FAX: 757-318-9107
WEB: www.mercymedical.org
Provides access to distant specialized
medical evaluation, diagnosis or treatment
through long-distance medical air
transportation.
Children’s Flight of Hope
Midwest Express Airlines
Miracle Miles Program
6744 South Howell Avenue
Oak Creek, WI 53154
PHONE: 800-314-7125
FAX: 414-570-0192
WEB: www.midwestairlines.com/
MidwestMiles/UseMiles/Donate.aspx
Works with several non-profit agencies to
provide transportation for children in need.
Check website for list of agencies.
Miracle Flights for Kids
2756 N. Green Valley Parkway #115
Green Valley, NV 89014-2120
PHONE: 800-359-1711
FAX: 702-261-0497
WEB: www.miracleflights.org
Free air transportation for children
and young adults to hospitals across
America.
Cancer Society
Southwest Airlines Medical
Transportation Grant Program
National Patient
Air Transport HELPLINE
Volunteer Pilots Association
Saint Louis, MO 63102
PHONE: 314-241-1600
WEB:
www.nationalchildrenscancersociety.com
Helps children with cancer and their
families by providing financial and
fundraising assistance for costs related to
medical treatment such as lodging and
travel.
c/o National Patient Travel Center
4620 Haygood Rd, Ste. 1
PHONE: 800-296-1217
EMAIL:
[email protected]
WEB: www.patienttravel.org
A general listing of discounted and free
air travel options. Referrals are made
to all known appropriate charitable,
charitably assisted and special patient
discount commercial services based on
an evaluation of the patient’s medical
conditions, type of transport required and
departure/destination locations.
Northwest Airlines, Inc.
AirCares Program
2700 Lone Oak Parkway,
Department A1300
St. Paul, MN 55121
PHONE: 800-327-2881
WEB: www.nwa.com/corpinfo/aircares/
partners/
Works with charitable organizations to
help support their travel needs. Availability
of the program is based on donated
WorldPerks mileage.
Operation Liftoff, Inc.
12207-C Natural Bridge Rd.
St. Louis, MO 63044
Phone: 314-298-9770
PHONE: [email protected]
WEB: www.operationliftoff.com
Provides trips within the United States for
children up to 18 years old who are facing
life threatening illnesses. Any child who
is afflicted with a life threatening illness is
eligible for a dream or treatment trip.
P.O. Box 36647 - 1CR
Dallas, Texas 75235-1647
PHONE: 214-792-1300
WEB: www.southwest.com/about_swa/
share_the_spirit/medical_transportation.
html
Annually donates tickets to medical
institutions for management and
allocation, who in turn give to individual
patients with financial or medical needs to
receive medical transportation.
P.O. Box 471
Bridgeville, PA 15017
PHONE:: 412-221-1374
WEB: www.volunteerpilots.org
Provides air transportation to needy
people who must travel to obtain medical
treatment. Our member pilots, flying
privately owned general aviation aircraft,
donate their time and flight expenses.
Because there is never a charge to those
they fly, a verifiable financial need must
exist. Able to transport patients who do
not require medical attention during
their flight and who can enter and exit
the aircraft with only limited assistance.
Because of the smaller size of the aircraft,
they have access to many small community
airports not served by scheduled airlines.
This often reduces the ground travel time
for the patient.
Ground
Transportation
Note: Many organizations offer free
ground transportation in most cities
for cancer patients through medical
institutions, local transit authorities, social
service agencies, religious organizations,
and cancer organizations. The social
worker at your treatment facility may be
able to help you find phone numbers
for any of these businesses or assist you
with information. Ground transportation
services may be offered or mileage
reimbursed through your state or local
Department of Social Services. These
national organizations may offer help.
Atlanta, GA 30329, GA 30329
PHONE: 800-227-2345
WEB: www.cancer.org
Road to Recovery program offers
transportation in many local areas.
275 7th Ave. New York, NY 10001
PHONE: 800-813-4673
FAX: 212-719-0263
Provides limited financial assistance
for transportation to treatment under
some circumstances.
Lodging
Believe in Tomorrow
6601 Frederick Road
Baltimore, MD 21228
PHONE: 800-933-5470
WEB: www.believeintomorrow.org
Offers overnight accommodations,
through their Children’s House
program, to critically ill children and
their families from 45 states in the USA
and 30 foreign countries.
Hope Lodges
1599 Clifton Rd, NE
Atlanta, GA 30329
PHONE: 800-227-2345
WEB: www.cancer.org/docroot/subsite/
hopelodge/index.asp
Free, temporary housing facilities for
cancer patients who are undergoing
treatment and their families. Hope
Lodges provide guests with private
rooms, kitchen facilities, and, in
some locations, transportation to
treatments. Many lodges have room
for a family member to stay with the
patient. Perhaps the most important
thing that a Hope Lodge provides is a
supportive and home-like atmosphere.
Accommodations and eligibility
requirements may vary by location.
National Association of
Hospital Hospitality Houses
PO Box 18087
Asheville, NC 28814-0087
PHONE : 800-542-9730
FAX: 828-253-8082
WEB: www.nahhh.org
Information on lodging and support
available for families receiving medical
care away from home. Services vary
from facility to facility and are offered
at little or no cost to the guests.
Cancer Society
PHONE: 314-241-1600
FAX: 314-241-1996
WEB: www.
nationalchildrenscancersociety.com
Financial and fundraising assistanceincluding costs related to medical
treatment such as lodging and travel.
Cancer Care, Inc.
Ronald McDonald House
Charities
1 Kroc Dr
Oak Brook, IL 60523
PHONE: 630-623-7048
FAX: 630-623-7488
WEB: www.rmhc.com
Provides referrals to local Ronald
McDonald Houses. The houses provide
lodging for families of seriously ill
children being treated away from
home. The lodging is usually close to a
hospital.
Joe’s House
50 Lexington Avenue, Ste 10 H
New York, NY 10010
PHONE: 877-563-7468
WEB: www.joeshouse.org
Provides a nation-wide online
service that helps cancer patients
and their families find lodging near
treatment centers.
Mesothelioma Web
PHONE: 877-367-6376
WEB: www.mesotheliomaweb.org/
TRAVEL.htm
Most of the travel listings are for shortterm stays. Please call for information
on rates and amenities.
Educational Financial Aid
The following organizations may offer financial assistance and scholarships.
The Andre Sobel Essay Award
8899 Beverly Boulevard, Suite 111
PHONE: 310-276-7111
WEB: www.andreriveroflife.org/award
A juried competition for young
survivors of a catastrophic illness.
Cancer for College
1345 Specialty Drive, Suite E
Vista, CA 92081
PHONE: 760-599-9339
WEB: www.cancerforcollege.org
Cancer for College (CFC) provides hope
and inspiration to those who have
battled cancer by awarding college
scholarships to cancer survivors.
In 2006, CFC added amputees to
the applicant pool, regardless if the
amputees are cancer survivors.
Cancer Survivor’s Fund
Some men see
things as they are
and say, “Why?”
I dream of things
that never were
and say, “Why
not?”
-George Bernard Shaw
P.O. Box 792
Missouri City, TX 77459
PHONE: 281-437-7142
FAX: 281-437-9568
WEB: www.cancersurvivorsfund.org
Provides college scholarships and
medical expense assistance for the
benefit of persons diagnosed with
cancer, receiving treatment for cancer
or in remission to give them a new
purpose and meaning in life.
Carolyn’s Compassionate
Children
276 Washington St. #343
Boston, MA 02108
PHONE: 866-540-1392
WEB: www.cccscholarships.org
Dedicated to improving the quality of
life for young adult cancer survivors
by increasing opportunity for college
access and success.
Financial Aid
WEB: www.finaid.org
FinAid was established in the fall of
1994 as a public service. This awardwinning site has grown into the most
comprehensive annotated collection
of information about student financial
aid on the web. Access to FinAid is free
for all users and there is no charge to
link to the site.
Friends of Scott Foundation
6977 Navajo Rd. #168
San Diego, CA 92119
PHONE: 619-223-7268
FAX: 619-223-7002
WEB: www.friendsofscott.org/
scholarship.aspx
Scholarship program is designed to
provide funding to survivors who want
to continue their education through
technical school, vocational school,
junior college, or a four-year college or
university.
Kyle Lee Foundation, Inc.
85 Sansovino
Ladera Ranch, CA 92694
PHONE: 714-433-3204
WEB: www.kylelee28.com/Kyle
Provides financial assistance to college
students who have survived cancer,
especially Ewing’s sarcoma.
Cancer Society
PHONE: 314-241-1600
FAX: 314-241-1996
WEB: www.children-cancer.org
Award Beyond the Cure Scholarships.
College-bound or enrolled childhood
cancer survivors who have illustrated
the ability to overcome the
difficult challenges of cancer with
determination and motivation are
encouraged to apply. Some of these
scholarships will have a localized
geographic focus.
National Collegiate Cancer
Foundation
P.O. Box 14190
Silver Spring, MD 20911
PHONE: 717-215-0943
WEB: www.collegiatecancer.org
Provides need-based financial support
to young adult survivors who are
pursuing higher education throughout
their treatment and beyond.
Furthermore, the Foundation promotes
awareness and prevention of cancer
within the young adult community.
Ulman Fund
Ryan Mullaly
Second Chance Fund
United Negro College Fund
302 Ridgefield Ct, Asheville, NC 28806
PHONE: 800-253-6530
WEB: www.pbtfus.org/survivors/education/
scholarships
Scholarship program for students who have
survived a central nervous system tumor.
May be used to cover tuition, fees and books
at any post-secondary institution, including
technical schools, vocational schools,
junior colleges and four-year colleges or
universities.
26 Meadow Lane, Pennington, NJ 08534
WEB: www.ryans2dchancefund.org
Scholarship assistance to young people
who are fighting cancer. We are looking for
young men and women whose high school
years were disrupted by cancer and whose
ability to qualify for most scholarships was
precluded by the extensive absenteeism
and physical disabilities which result from
chemotherapy and radiation.
SAMFund for Young Adult Survivors
of Cancer
101 Federal Street, Suite 1900
Boston, MA 02110
PHONE: 866-439-9365
WEB: www.thesamfund.org
By providing various grants and scholarships
to young adult survivors to help supplement
the money that they and their families had
lost during treatment, and pay for specific
transitional issues, such as education, living,
job search and lingering medical expenses.
SuperSibs!
Scholarship Program
5005 Newport Drive, Suite 502
Rolling Meadows, IL 60008
PHONE: 866-444-7427
WEB: www.supersibs.org/programs-andservices/scholarship-program
Offers scholarships to graduating high school
seniors. To qualify, applicants must be a
sibling of a child who has (or has had) cancer,
live in the United States and be a graduating
high school senior, and must be attending an
accredited educational institution.
10440 Little Patuxent Parkway, Suite G1
Columbia, MD 21044
PHONE: 888-393-3863
Offers scholarships to support the financial
needs of college students who are battling,
or have overcome cancer and who display
financial need. Povides support programs,
education, and resources, free of charge,
to benefit young adults, their families and
friends, who are affected by cancer, and
to promote awareness and prevention of
cancer.
8260 Willow Oaks Corporate Drive
P.O. Box 10444, Fairfax, VA 22031-8044
PHONE: 800-331-2244
WEB: www.uncf.org
Provides outstanding African American,
American Indian/Alaska Natives, Asian Pacific
Islander Americans, and Hispanic American
students with an opportunity to complete
an undergraduate college education, in all
discipline areas and a graduate education
for those students pursuing studies
in mathematics, science, engineering,
education, or library science.
Educational Financial Aid
Pediatric Brain Tumor Foundation of
the United States
Working Against Cancer Survivor
Scholarship Program
246 Claremont Ave
Long Beach, CA 90803
WEB: www.workingagainstcancer.org/
survivor_scholarship.html
Assists young adult cancer survivors by
providing awards toward academic and
vocational education. These scholarships
will encourage each recipient to engage in
a trade, an art, or some other form of higher
education relieving some of the additional
burden in obtaining the necessary finances
to reach these goals. Candidates must be a
cancer survivor or recently diagnosed with
cancer, but do not need to be currently
receiving treatment to qualify.
Notes:
Teen & Family Resources
Teen
Child
& /Family
Teen /Resources
Family ResourcOures
children and teens with cancer endure great challenges.
So do their caregivers. This section lists resources that can help
ease
Our
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burden: and
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fulfillment
with organizations,
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of books,
videos
and free stuff;
and vacation
retreats;
andlists
peer to
challenges.
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their caregivers.
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sections
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like can
online
forums
pals wish
for kids,
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resources
help
ease and
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burden:
fulfillment
andporganizations,
siblings.
lists of books, videos and free stuff; camps
and vacation retreats; and peer to peer resources like
online forums and pen pals for kids, parents and siblings.
these organizaitons fdo not meet medical or finaicial
needs, but provide some magic in the midst of facing a
life-threateneing illness.
Teen & Family Resources | 69
Wish Fulfillment Organizations
National wish fulfillment organizations grant a wide variety of wishes that are
requested by children and teens between 2 and 18 years old. Wish expenses are
covered for the family, including all the costs related to the child’s wish. Wishes
are granted to children and teens with chronic, life-threatening, or terminal
illnesses. Each organization has its own eligibility requirements and conditions
for granting wishes.
General Wish
Fulfillment
Angelwish
It seems to me
that we can never
give up longing or
wishing while we
are alive. There
are certain things
we feel to be
beautiful and
good, and we must
hunger for them.
-George Eliot
70 | Teen & Family Resources
18 Glen Road
Rutherford NJ 07070
EMAIL: info,@angelwish.org
WEB: www.angelwish.org
PHONE: 201-672-0722
FAX: 440-699-4337
Allows the public to grant wishes to the
millions of children that are living with
HIV/AIDS around the world. Whether
infected or affected by the disease, their
childhood will never be the same.
Believe in Tomorrow
6601 Frederick Road
Baltimore, MD 21228
PHONE: 800-933-5470
FAX: 410-744-1984
WEB: www.believeintomorrow.org
Educational, recreational and
supportive programs and services
that help to relieve the stress endured
by children being treated for a lifethreatening illness and their families.
Benefit4Kids
21660 23 Mile Road, Macomb, MI 48044
PHONE: 877-245-5430
WEB: www.benefit4kids.org
Grants the outdoor wishes of children
with life threatening and life limiting
illnesses. Also work to involve today’s
children in the outdoors and the many
activities it offers them.
Challenge Air
Love Field Airport - North Concourse
8008 Cedar Springs Rd., LB24
Dallas, TX 75235
PHONE: 877-359-5437
FAX: 214-351-6002
WEB: www.challengeair.com
Motivational, inspirational and lifechanging experiences to physically
challenged children and youth through
aviation. They take children up in small
planes and allow them to steer the
plane for a few minutes. Available in
several cities.
Children’s Hopes
and Dreams Foundation
138 Cloudland Road
Dahlonega, GA 30533
PHONE: 702-482-2248
WEB: www.helpingnow.org
Cooperates with organizations such as
the American Cancer Society, serious
illness camps, Ronald McDonald
Houses, children’s hospitals nationwide,
Leukemia Society, Muscular Dystrophy
Association, and many more. Children’s
dreams have included: meetings with
celebrities such as Michael J. Fox,
Robin Williams, Neil Diamond, Arnold
Schwartzenegger, Reba McEntire,
and many others; computers, visiting
favorite relatives, puppies, Disney World
trips, shopping sprees, etc.
8615 Roswell Road
PHONE: 800-323-9474
WEB: www.childrenswish.org/
Grants any wish for any terminally ill
child under the age of 18, regardless of
where the child lives or where he or she
is undergoing treatment. Wish expenses
are covered for the family including airline
tickets, rental expenses, meals, spending
money, and any salary potentially lost as a
result of parents taking time off from their
jobs to share their child’s wish.
Clayton Dabney Foundation
6500 Greenville Ave. Suite 342
Dallas, TX 75206
PHONE: 214-361-2600
WEB: www.claytondabney.org
Provides families of children in the last
stages of terminal cancer with assistance
in creating ‘Everlasting Memories’. The
assistance is arranged through the parents
and is anonymous to the child.
Disneyland Resort Medical
Compassionate Program
Disneyland Resort Public Affairs
PO Box 3232
Anaheim , CA 92803
Free passes for terminally ill children, ages
3 to 18, who have not had a wish fulfilled
by Disneyland or any wish granting
organization. Request must be made
through your local or national wishing
organization.
The Dream Factory
200 W. Broadway, Suite 504
Louisville, KY 40202
PHONE: 800-456-7556
WEB: www.dreamfactoryinc.com
Grants dreams to children diagnosed
with critical or chronic illnesses who are 3
through 18 years of age.
Famous Fone Friends
9101 Sawyer Street
PHONE: 310-204-5683
WEB: www.famousfonefriends.org/
Provides encouragement and friendship
to children who are hospitalized or
homebound due to illness or injury. Actors,
athletes, and musicians call children
to help lift their spirits. Call or write for
information on enrolling your child in this
program.
Give Kids the World
210 S. Bass Road
Kissimmee, FL 34746
PHONE: 800-995-5437
WEB: www.gktw.com/
Grants wishes for a trip to Disney World
or other Florida attraction to terminally ill
children ages 3 to 18. It is preferred that
requests be made through your local or
national wish-granting organization.
The Lighthouse Family Retreat
PO Box 847
Marietta, GA 30061
PHONE: 678-290-2955
WEB: www.lighthousefamilyretreat.org
Provides seaside retreats along the Florida
panhandle for families living through
childhood cancer. Our program was
designed to bring joy to children with
cancer and their families, while renewing
their strength, hope, and love.
Little Star Foundation
256 Rancho Milagro Way
Hesperus, CO 81326
PHONE: 800-543-6565
WEB: http://www.littlestar.org
Founded by tennis pro Andrea Jaeger,
Little Star provides a summer camp
and grants wishes to children receiving
treatment for illnesses.
Children’s Wish
Foundation International
Kids Wish Network
4060 Louis Ave.
Holiday, FL 34691
PHONE: 888-918-9004
WEB: www.kidswishnetwork.org
Fulfills wishes of children with lifethreatening illnesses, sometimes even
granting second wishes. The Kids Wish
Network has also developed a funeral
assistance program for families of their
wish kids that have passed away.
Make a Dream Come True
Leukemia Foundation
7316 Avenue U
Brooklyn, NY 11234
PHONE: 718-251-1222
WEB: www.leukemiafoundation.org
Fulfills the dreams and wishes of young
leukemia patients, both by answering their
individual desires, and by arranging trips,
outings, and private introductions with
famous people.
Make-A-Wish Foundation
of America
3550 North Central Avenue, Suite 300
Phoenix, AZ 85012-2127
PHONE: 800-722-9474
WEB: www.wish.org
Grants wishes to children who have lifethreatening medical conditions creating
the probability that the children will
not survive beyond their 18th year. This
organization operates internationally
and will make referrals to local chapters.
The national office provides services for
geographical areas which are not covered
by local chapters.
The Marty Lyons Foundation
It’s not what
happens to you,
it’s what you do
before it, during it,
and after it.
326 West 48th Street
New York , NY 10036
PHONE: 212-977-9474
WEB: www.martylyonsfoundation.org
Fulfills the special wishes of children aged
three (3) to seventeen (17) years old, who
have been diagnosed as having a terminal
or life threatening illness by providing and
arranging special wish requests.
financial strain due to the child’s illness.
United Special
Sportsmen Alliance
7864 Shotwell Rd
Pittsville, WI 54466
PHONE: 800-518-8019
WEB: www.childswish.com/
Coordinates with other caring
organizations worldwide in fulfilling a
dream wish. They grant terminally ill
and disabled sportsmen and women an
outdoors adventure of their dreams.
Walt Disney World
Compassion Program
PO Box 10000
Lake Beuna Vista, FL 32830-1000
PHONE: 407-828-3453
Provides free passes for terminally ill
children ages 3 to 18 who have not had a
wish granted by Disney world or any other
wish-granting organization. It is preferred
that requests be made through your local
or national wishing organization.
-Alan Weiss
5757 Wilshire Blvd. Suite M100
PHONE: 310-479-1212
Dedicated to brightening the lives of
seriously ill children (ages 4-18) through
wish granting.
PO Box 5804, Santa Maria, CA 93456
PHONE: 940-898-8244
WEB: www.westernwishes.org
Grants wishes to kids faced with
adversity and who love the western way
of life. Since 1994, this award-winning
program, has had the pleasure of turning
dreams into lasting memories for these
inspiring kids.
Special Wish Foundation
Wishing Star Foundation
1250 Memory Lane N - Suite B
Columbus, OH 43209
PHONE: 800-846-9474
WEB: www.spwish.org
Grants wishes to children ages birth to 20
who are diagnosed with life-threatening
or terminal illness.
Sunshine Foundation
1041 Mill Creek Drive
Feasterville, PA 19053
PHONE: 215-396-4770
WEB: www.sunshinefoundation.org
Reaches out to children ages 3-21
suffering from terminal, as well as chronic,
illnesses whose families are under
Western Wishes Foundation
139 S. Sherman
Spokane, WA 99202
PHONE: 509-744-3411
WEB: www.wishingstar.org
Grants wishes to children with lifethreatening illnesses between the ages
of 3 and 21, living in Eastern and Central
Washington and Idaho. A child does not
need to be terminal to qualify for a wish.
Wishing Well Foundation USA
3000 West Esplanade Avenue, Suite 100
Metairie, LA 70002
PHONE: 541-841-0001
WEB: www.wishingwellusa.org/
the opportunity to enjoy normal or
extraordinary activities they might
otherwise not be able to afford.
Sunset Wish Foundation
P.O. Box 5703
Winston-Salem, NC 27113
PHONE: 336-978-9474
WEB: www.sunsetwishfoundation.com
Provides wishes to adults 18 years and
older who have a prognosis of less than
one year. Must be a resident of the United
States.
Provides children with life-threatening
illnesses with their fondest wish in life.
Wish Fulfillment for
Young Adults
Wishing organizations that fulfill
the wishes of terminally ill young
adults ages 18 and older.
Dream Foundation
1528 Chapala Street, Suite 304
Santa Barbara, CA 93101
PHONE: 805-564-2131
FAX: 805-564-7002
WEB: www.dreamfoundation.org
Grants wishes to people ages 18 to 65 with
a life expectancy of one year or less.
The Nicki Leach Foundation
P.O. Box 1657
Ponte Vedra Beach, Florida 32004-1657
PHONE: 904-280-8916
FAX: 904-280-8917
WEB: www.nickileach.org
Provides high school and college age
students (age 16 – 25) with cancer
Books, DVDs, Games, Activity Websites
Geared toward children and teens, these resources offer information as well as
as activities that can make another boring day FUN!
Books
Whether an autobiographical
story about another kid with
cancer, a picture book to help
parents explain what cancer is
to little children, or an activity
book to increase fun in the
hospital, we’ve compiled some
favorites.
Unless otherwise noted, all
books can be purchased at
Amazon.com or your local
bookstore.
Learn form yesterday, love for today,
hope for tomorrow.
-Albert Einstein
Angels & Monsters
A child’s eye view of Cancer
by Lisa Murray
and Billy Howard
In an awe-inspiring photographic
essay, art therapist Lisa Murray and
photographer Billy Howard portray
25 childhood cancer patients as
they express through art and words
their feelings about the cancers that
threatened them.
Art Activities for
Children at Bedside
by Judy Rollins
Author has 30 years of experience
in arts in healthcare with children,
their families and caregivers. Book
has activitie ranging from cards, to
bringing the outside in, to puppet
making. Go to www.wvsarts.org or call
202-296-0201.
Ashleigh’s Fairies
by Amy and Ashleigh
Kieliszewski
Ashleigh Marie Kieliszewski was
diagnosed with Neuroblastoma, an
aggressive childhood cancer, one
month before her third birthday.
During her 21 month courageous
battle, Ashleigh inspired countless
people and taught us the importance
of loving and living.
Be the Boss of Your Pain
Self-care for Kids
(Be the Boss of
Your Body Series)
by Timothy Culbert, M.D. &
Rebecca Kajander
Kids learn ways to manage and relieve
the pain of common headaches and
stomachaches, as well as pain related
to injuries and illness. Self-care skills
include belly breathing, positive selftalk, aromatherapy, and acupressure.
Boy of Steele
by Laura Seeley
Young Michael Steel loves to watch
the New York Yankees on TV—from his
hospital bed. Michael has brain cancer.
But when Yankee second baseman
Robinson Cano visits Michael in the
hospital, Michael embarks on an
unexpected and wonderful journey
when he becomes a Yankee batboy for
a day. When Michael’s illness makes
him weak on the field, can he be strong
enough to fulfill his batboy duties and
make his new teammates proud?
Bunnies in My Head
by Tricia Tusa with art from
children of M.D. Anderson, TX
A children’s book with 35 drawings by
cancer patients who participated in the
University of TX Children’s Art Project
at M.D. Anderson Cancer Center. All
proceeds go toward the hospital’s
varied children’s programs. To order,
call 1-800-231-1580 or visit www.
childrensart.org.
Can I Catch Cancer?
by Cristine Thomas
Clever book about a question often
asked when trying to explain cancer to
any child.
Cancer Kids Can Too!
FUN books for kids with cancer.
Books for both boys & girls:
Multicultural availability. See www.
cancerkidscantoo.org or contact
Cristine Thomas, 304 Gail Drive, Griffin,
GA 30224 phone: 770-228-8233 Visa/
MC/Paypal accepted.
A sweet insight for children of all ages-”Cancer Rhymes with Dancer” provides
a unique overview of how a life can
be affected by cancer. Full of fun
illustrations and delightful text.
W. M/D
Chemo Crusader and the
Cancer Fighting Crew
by Melodie Homer
A great super hero fun for kids ages
4-10. Wonderful new graphics appeal
to kids with simple, inspiring text.
Order from author Melodie Homer, RN,
MSN, AOCN at 856-596-7229 or writing
PEPCO, 4 Sweetgum Ct., Marlton, NJ
08053.
Chemo Girl: Saving the World
One Treatment at a Time
by Christina Richmond
Dear Bruno
by Alice Trillin
Trillin, who in 1976 discovered she
had lung cancer, shares her healing
experience with Bruno, a 12 year old,
in an attempt to cheer him up with
impromptu humor and to install
courage, a matter-of-fact attitude
toward one’s illness, even a touch of
irreverence.
Draw Me a Picture
by Susan Nessim, cancer
survivor, with Barbara Wyman
A coloring book specifically designed
for 3-6 year-olds with cancer and those
who care about them.
Contact Cancervive at 800-4-TOCURE,
[email protected],
www.cancervive.org.
Friends for Life
Chemo Girl is the fictional tale of
a superhero created by Christina
Richmond, who was diagnosed with
Rhabdomyosarcoma, a rare type of
muscle cancer, when she was in the
seventh grade.
An activity book designed for kids ages
7-11. It is available through Cancervive
by calling 800-4-TOCURE, emailing
[email protected] or writing
Cancervive, Inc., 11636 Chayote Street,
Los Angeles, CA 90049. (created by
cancer survivor, Susan Nessim).
Childhood Cancer Survivors:
A Practical Guide
to Your Future
by Nancy Keene, Wendy Hobbie
and Kathy Ruccione
Flying With Scissors
A Different Perspective on
Childhood Cancer
by Bob Wallace
Practical advice for cancer survivors
and stories from over 100 survivors
and parents.
The Courageous Kid
by John McFadde
An interactive story book (ages 5-12)
with a place for each child to write
their own story alongside the story
of 8 year-old Bobby who has cancer.
Free to families, treatment centers and
hospitals (up to 100 copies), by calling
909-849-HEAL or writing to:
The Cancer Federation, P.O. Box 1298,
Banning, CA 92220.
A Day with Dr. Waddle
from the Center for
Basic Cancer Research
Children, just like adults, often have
questions about cancer, particularly
when the illness is in their own family.
A Day with Dr. Waddle was written
and illustrated by staff member of
the Cancer Center at Kansas to help
children understand cancer.
Cancer Rhymes with Dancer
by Linda McCowan
Takes the personal experiences and
insights of children who have battled
cancer and turns them into universal
truths that relate to each of us. It
provides a non-traditional look at a
typically solemn topic. “Flying with
Scissors” is a resource and companion
for anyone close to a child going
through the cancer experience.
H is for Hair Fairy
An Alphabet of Encouragement
and Insight for Kids
by Kim Martin
An alphabet book with a mission, this
32-page picture book will inspire,
comfort, educate and encourage
children being treated for cancer. Using
colorful, warm, humorous illustrations
and verse, the author employs the
alphabet to feature different aspects of
coping with cancer treatment.
Harry Goes to the Hospital
A Story for Children About What
It’s Like to Be in the Hospital
by Howard J. Bennett M.D.
& M. S. Weber
This story follows Harry (with his Mom
and Dad) through the experience of
going to the hospital. Harry doesn’t
like having to meet lots of new people,
getting poked with needles, and staying
the night in a strange place, all the while
feeling sick to his tummy. But with his
parents’ comfort and the help of lots of
doctors, nurses, and other people, Harry
learns that the hospital doesn’t have to
be a big, scary place.
In the realm of
ideas everything
depends on
enthusiasm…
in the real world
all rests on
perseverance.
-Goethe
Healing Images for Children
Activity Book
For Days When Quiet
Activities Are Best
by Nancy C. Klein
Seven stories and a progressive
muscle relaxation exercise are set to a
background of calming music. The CD
is a convenient, helpful way to reinforce
the relaxation, breathing, and active
imagination techniques from the book
Healing Images for Children. It provides
ready access to the calming messages
from the book. Children can use the CD
on the way to appointments, in waiting
rooms, as well as during therapy.
Hugs, Hope And Peanut Butter
by Marsha Mott Jordan
Uplifting and often- humorous essays
about everything from husbands, wild
bears, and a day in the emergency
room, to aging, in-laws, and living with
chronic illness. With essays illustrated by
critically ill children, the author draws
upon her own experiences of dealing
with chronic pain and depression to
mix the serious with the lighthearted to
bring a message of hope to the hurting.
I Can Too!
Cancer Kids Can Too!
by Cristine Thomas
A matter of fact I CAN series for kids
with cancer. Join The Cancer Kids as they
show the whole world what they can do.
Full of creative illustrations. Helps boost
self-confidence. Activity pages included
for drawing.
I’m A Superhero
by Daxton Wilde
Written by four-year-old Daxton Wilde
with the help of his mother while he
was undergoing chemotherapy and
radiation treatments for a brain tumor,
the book places Wilde as the central
character, a superhero, fighting “a bad
guy named Cancer” with the help of
“Captain Chemo”.
I’m Having a Bone Marrow
Transplant. A Coloring Book for
and by BMT patients
Best for 3-10 year olds in need of or
currently undergoing a transplant. Order
through The Leukemia & Lymphoma
Society at 1-800-955-4572 or on the web
at www.leukemia-lymphoma.org.
Imagine a Rainbow
A Child’s Guide
for Soothing Pain
by Brenda S. Miles, Ph.D.
When a child is in pain, imagining
scenes that are soothing or uplifting
may help reduce the discomfort.
“Imagine a Rainbow” is a beautiful tool
for introducing children to the idea of
using their imaginations to cope with
pain, whether by itself or as part of a
more comprehensive pain management
plan. The book also includes an
extensive note to parents that explains
the techniques of imagery and deep
breathing, and how to help children use
them.
76 Teen & Family Resources
A 64 page magical fable takes readers,
young and old, on a journey which
conveys the importance of humor and
courage. With delightful cartooning
and rhyming text this award-winning
New York Times best-selling picture
book is a special inspiration to young
cancer patients as its author/illustrator,
David Saltzman, created the Jester
while battling Hodgkin’s Disease.
Phone 1(800)9-JESTER or visit their
website at www.thejester.org.
The Karing Book
A medical records and appointment
organizer. Helps relieve the stress
related to mangaing and organizing
in the midst of the cancer battle.
Founder, Charlotte Hawkins, is the
mother of Kara who had cancer. To
order the organizer, call Charlotte at
1-800-9KARING (OR) or write to Karing,
82790 Davidson, Tygh Valley, OR 97063.
Kemo Shark
by H. Elizabeth King
WEB: http://www.kidscope.org/kemo.
html
The hero of a sixteen page color “comic
book” designed to help children
understand the psychological and
physiological changes in a parent with
cancer who undergoes chemotherapy.
Kemo Shark was written by a child
psychologist, H. Elizabeth King, Ph.D.,
who is also a breast cancer survivor.
Kathy’s Hats
A Story of Hope
by Trudy Krisher
A biographical sketch of a young
girl’s experiences with cancer and
chemotherapy. From infancy, when
her mother stuck a ribbon on her bald
head, to the vision of picking out a hat
for a child of her own, Kathy relates
how headgear has marked special
events in her life. This includes, of
course, the hats she wore when her
hair fell out from cancer treatments.
Lauren’s Story:
An Inspirational
Cancer Journey
by Lauren & Jennifer Frank
Lauren’s Story is a joint effort
between Lauren and her mother,
Jennifer. Together they put together a
scrapbook that shows the journey that
Lauren has taken through her cancer
treatment and recovery. A portion of
the proceeds of the sale of Lauren’s
Story will be donated to organization’s
that support childhood cancer.
Let’s Talk About
When Kids Have Cancer
by Melanie Apel Gorden
Another Bestseller from the “Let’s Talk
Library”, discusses what cancer is, its
treatment and side effects, and how it
affects the lives of its victims and their
families.
Little Tree
by Joyce C. Mills
Fictional story provides hope and
inspiration for children facing serious
illness. Includes a “Note to Parents”
section, written by a child psychologist,
providing guidance for parents and
describes relaxation exercises they may
teach their children.
Living Well with
My Serious Illness
by Marge Eaton Heegaard
With the creative and interactive
drawing activities in this book, kids can
learn to better understand their illness
and develop healthy coping skills. An
Art Therapist, author Marge Eaton
Heegaard offers an honest, gentle
way to help children regain a sense of
power and to express difficult feelings
more effectively.
My ABC Book of Cancer
by Shannin Chamberlain
“A is for the American Cancer Society
who lets me go to camp...”
The story--in ABC format in text and
drawings--of a 10-year-old cancer
patient. It has supplemental text about
her and childhood cancer, glossary,
bibliography and resources list.
The Jester Has Lost His Jingle
by David Saltzman
My Worst Friend,
by P. J. Peterson &
Meredith Johnson
After a sharp-tongued fifth-grader
undergoes surgery for a brain tumor
she is uncomfortable because
suddenly everyone is unnaturally nice
to her.
On the Wings of a Butterfly
by Marilyn Maple
Beautiful watercolor illustrations
accompany this poignant story about
the friendship between a young
girl dying of cancer and a caterpillar
preparing to become a monarch
butterfly. Butterfly opens the door for
talking about death, dying, and the
wonder of life.
Penny Whistle Sick-in-Bed
Book: What to Do with Kids
When They’re Home for a Day,
a Week, a Month, or More
by Meredith Brokaw,
Annie Gilbar & Jill Weber
The Penny Whistle SICK-IN-BED BOOK
comes to the rescue with a delightful
collection of absorbing activities to
occupy young patients, and advice and
ideas for their parents, from setting
up a sickroom to helping a bedridden
child stay physically fit.
Princess Khrystle
and the Monster Cancer
An Informative Fairytale
Version About
Brain Cancer in Children
by Khrystle & Yolanda Lopez
No disease
likes hope.
-Hindu Proverb
Princess Khrystle and the Monster
Cancer is an informative fairytale
about brain cancer in children. The
story revolves around a child who
encounters the aggressions of the
monster Cancer and how her life is an
example on how we can all encounter
the monsters of our lives. Princess
Khrystle leaves her legacy of love,
learns the most difficult life lesson, and
keeps her promise to share this secret
of her enlightenment.
Starbeams, Dogs and Cancer
by Franklin Abshire
Abshire wrote this children’s book
for his three grandchildren to try to
explain in gentle terms how someone
(or a pet dog) could develop cancer
through no fault of their own. If you or
a loved one are searching for a way
to introduce this subject to a young
child, this book will be helpful.
Taking Cancer to School
“Special Kids in School” Series
by Kim Gosselin
Max is diagnosed with leukemia.
This straightforward story may help
to alleviate some of the concern
that accompanies the diagnosis of
childhood cancer.
They Never Want to Tell You
Children Talk About Cancer
by David Bearison
In these extraordinary narratives,
children coping with cancer reveal
their most personal experiences, and
they speak with a candor that breaks
through the cultural taboos ostensibly
designed to protect us from the
disease.
There Is a Rainbow Behind
Every Dark Cloud
by Gerald G. Jampolsky
Eleven children share their experiences
with terminal illness, especially the
ways they helped each other cope with
the prospect of their own death.
You and Your Cancer
A Child’s Guide
by Lynda Cranston
& Ronald Barr
Written in a language and tone
understandable to children in the
five-to eight-year-old age group.
Storybook format makes the book
appealing to this age group. Explores
every aspect of the child’s life that has
been, and will be, affected by cancer
(school, friends, eating etc.).
Willie’s Wagon
by Gary Metivier
A story to inspire healthy children to
think of others --and for sick children
to realize they are not alone. A bored
7 year old finds inspiration when he
discovers an old wagon. He fixes it
up and helps children enjoy a pumpkin
patch experience they will never forget
(best for ages 0-10). Available for
$7.95 at www.willieswagon.com or by
emailing the author at
[email protected].
We are proud to be helping send
children to oncology camp.
Books For Siblings /
Families
A Time for Dancing
by Davida Wills Hurwin
Oliver’s Story:
For ‘Sibs’ of Kids with Cancer
by Michael Dodd
Best friends throughout their entire childhoods,
Samantha and Julie are devastated when Julie is
diagnosed with cancer the summer before their
senior year, and their friendship changes in many
difficult ways.
Fighting For My Life
Growing up with Cancer
by Amy M. Mareck
The autobiography of a young cancer patient,
chronicling her brave fight from her diagnosis at
age 13 to her death at age 19.
Kids with Courage
A collection of thoughts by cancer survivors
compiled into a book to provide inspiration
to others experiencing cancer. The book was
produced by Comprehensive Cancer Center at
the University of Wisconsin and proceeds will go
to the Pediatric Hematology/Oncology research
program and patient support funding. To order,
call 800-322-1468 (WI).
Teenagers Face to Face
with Cancer
by Karen Gravelle
Teenagers with cancer and those in remission
describe their treatments and how they’ve
coped with having cancer. The authors interject
facts about common teen cancers and provide
psychological guidance for each teen’s situation.
Teenage Cancer Journey
by Kathleen A. Gill
Teenage Cancer Journey captures, from a teen’s
perspective, what it’s like to be confronted with
a life-threatening illness during the transition
from child to adult. It describes Gill’s personal
struggles with philosophical questions (“Why
me?”), as well as with practical dilemmas (“Will
my wig stay on while I’m riding a roller coaster?”).
There is an important story to be told for every
brother or sister of a child with cancer. That’s
because when you find out your brother or sister
has cancer, all of a sudden, life can get turned
upside down.
The Other Kid
WEB: www.theotherkid.com
A draw-it-out guidebook for kids dealing with a
special needs sibling.
What About Me? When Brothers and
Sisters Get Sick
by Allan Peterkin &
Frances Middendorf
This question, usually unspoken, lies at the heart
of this poignant story, as a young girl attempts to
cope with her brother’s being ill. This story deals
with the many complicated feelings the well
child experiences in such a situation.
When Molly Was in the Hospital
by Debbie Duncan
Anna’s little sister, Molly, has been very ill and
had to have an operation. Anna tells us all about
the experience from her point of view. A support
and comfort for siblings and those who love
them.
Books Specifically for
Teens (13+)
Living With Childhood Cancer:
A Practical Guide to Help Families Cope
by Leigh A. Woznick &
Carol D. Goodheart
Written by two individuals who survived the
stress of family cancer by mobilizing their
resources and rebuilding their lives. In this downto-earth guidebook, the mother-daughter team
Leigh A. Woznick and Carol D. Goodheart draw
on their own family’s experience with cancer, as
well as their expertise -- one as a parent and the
other as a psychologist.
Childhood Leukemia
A Guide for Families,
Friends and Caregivers
by Nancy Keene
Covers detailed and precise medical information
about leukemia and the various treatment
options, but also day-to-day practical advice on
how to cope with procedures, hospitalization,
family and friends, school, social and financial
issues, communication, feelings, and, if therapy
is not successful, the difficult issues of death and
bereavement. Woven among the medical details
and the practical advice are the voices of parents
and children who have lived with leukemia and
its treatments.
DVDs / Videos /
Games
Andrew the Bug
(ages 4-10): GAME
Family faces are
magic mirrors
looking at people
who belong to us;
we see the past,
present and future.
-Gail Lumet Buckley
WEB: www.geocities.com/
Andrewthebug
A 3D computerized bug, Andrew,
and colorful computer generated
background mixed with actual video of
a young Leukemia patient, Jules, as he
journeys through hospital stays and like
with cancer as a 6 year old. Ten minute
video is available from the creator,
Denise Gallant: 500 Corralitos Ridge
Road, Watsonville, CA 95076, phone
831-768-8727 (CA), fax 831-768-1879.
Ben’s Game: GAME
WEB: www.makewish.org/site/
pp.asp?c=cvLRKaO4E&b=64401
This is a game about fighting cancer. In
this game, you play the role of a hero on
a hovering surfboard with ultra-hightech weapons. You are the cure!” Free,
downloadable from the linked site, for
PCs and for MACs.
Blood Counts Information for
Kids with Cancer: WEBSITE
WEB: pedspain.nursing.uiowa.edu/
BCounts/index.HTM
Unique and special website for kids that
uses animated blood cells to explain
blood counts, chemotherapy, blood and
cancer cells. Developed by an oncology
nurse and child psychologist. This site
talks to kids so that kids can understand
what is happening in their bodies.
Bust a Cell: GAME
WEB: info.cancerresearchuk.org/
youthandschools/gamesandpuzzles/
bustacell/
Can you repair the damaged cells before
they multiply out of control? The aim is
to keep your cells healthy. Five different
levels of the game represent different
parts of the body, and the cells multiply
more quickly at each stage. Plus, you
can earn extra points by answering
questions about common cancers.
Cancer Blast: GAME
WEB: www.cancerkids.com/
Use a ‘laser’ to destroy cancer cells.
CancerKids.com: WEBSITE
WEB: http://cancerkids.com
A fun site to help children learn about
cancer with general information, stories,
books, videos, activities and games,
including information for parents.
The Cancer Game: GAME
WEB: http://www.cancergame.org/
Want to play a fun video game to help
you get some stress or anger out over
your frustration with cancer? You’ve
come to the right place. The Cancer
Game is a completely free game that
will help you feel much better. The
Cancer Game has been tested and
approved by people of all ages, children
and grown-ups alike!
CancerEd: Necessary Pictures
Film and Media: VIDEO
by Joe Nardelli and Colleen Goddard.
A workshop presentation kit for
schools or communities. The workshop
is designed to engage,
empower, and enlighten
students and teachers to the
social, emotional, physical,
and psychological aspects of
childhood cancer. It consists
of a video and workbook
which independently
celebrate childhood cancer
awareness. Together they are
designed to connect students
& teachers, schools, families,
and communities. 1-800-2213170. PO Box 107, Old Chelsea
Station, NY, NY 10011-0107.
WEB: http://www.royalmarsden.org.uk/
captchemo/index.asp
(Royal Marsden Hospital, UK) A Web site
and computer game for young people
with cancer. Captain Chemo is a cartoon
character created by a former patient. Here
you can help to shoot and destroy tumors,
answer questions about cancer and more.
Chasing Rainbows: Young Adults
Living with Cancer: VIDEO
WEB:
www.chasingrainbowsproduction.com
Chasing Rainbows: Young Adults Living
With Cancer is a 43-minute documentary,
enhanced with original music and
animation, that offers a powerful insider’s
perspective on the specific issues that
young people face when they are dealing
with a life-threatening illness. Other young
adults living with cancer, as well as their
friends and families, will find in Chasing
Rainbows a rare and welcome source of
information, hope and support – provided
by six courageous young people who truly
“get it.”
Conquering Cancer Network:
CD ROM
WEB: www.conqueringcancer.net/
This is an interactive CD for teens who
have or who had a solid tumor. It is
produced by the Degge Group, the same
group that did the Kidz with Leukemia CD
(above).
Discovery to Recovery: VIDEO
WEB: www.nmpd.org
A DVD Guide to Bone Marrow
Transplantation for Children ages 5-9.
Can be ordered through the Office of
Patient Advocacy-National Marrow Donor
Program 1-888-999-6743.
The Healing Path: VIDEO
The Compassionate Friends sibling video
addresses concerns of surviving siblings,
such as sadness, pain, anger, and fear.
Video explores eight topics: facing the
reality of death, who will listen, changed
family life, special days, visiting the
cemetery, parental overprotection, feelings
and expectations, and looking to the
future. For information, call 877-969-0010
or 630-990-0010.
Kidz With Leukemia: CD ROM
WEB:www.kidzwithleukemia.com/
The Kidz CD ROM is targeted at young
children with leukemia.
Kids Tell Kids What It’s Like
When Their Brother or
Sister Has Cancer: VIDEO
Chayote Street, Los Angeles, CA 90049
PHONE: 800-4-TOCURE
EMAIl: [email protected]
WEB: www.cancervive.org
A 15 minute documentary film that follows
a sibling narrator as she chats with other
siblings who are facing the same issues as
herself.
A Lion in the House by
Independent Lens: VIDEO
WEB: www.itvs.org/outreach/
lioninthehouse/
An intimate, intense and ultimately
inspiring documentary about ordinary
people getting through the impossible.
From the trauma of diagnosis to the
physical toll of treatment, from the stresses
that can tear a family apart to the courage
of children who face the possibility of
death with honesty and humor, rebellion
and dignity, As the film compresses six
years into one narrative, it puts viewers
in the shoes of parents, physicians,
nurses, siblings, grandparents and social
workers as they struggle to defeat an
indiscriminate and predatory disease.
My Hair’s Falling Out . . . Am I still
Pretty?: VIDEO
WEB: www.itvs.org/outreach/
lioninthehouse
A fictional, one person performance
which tells the story of a young girl who
is diagnosed with leukemia, undergoes
hospitalization and chemotherapy, and
returns to school, her cancer in remission.
Writer, Actress Colleen Goddard plays all
the characters in this twenty two minute
program.
Captain Chemo’s Adventures:
GAME / WEBSITE
Re-Mission: GAME
WEB: www.re-mission.net/
Developed by HopeLab, Re-Mission is
a cool and fun game that gives young
people a sense of power and control over
cancer. Research shows that young people
who played Re-Mission increased their
understanding of cancer and adhered to
their treatments more consistently.” Cigna’s
website: https://secure.cigna.com/form/
formmail/hopelab/ offers the game for
free, or download/order on the Re-mission
website.
Spinoza the Bear Who Speaks
From The Heart: WEBSITE
PO Box 97
Cornucopia, WI 54827
PHONE: 800-282-2327
WEB: www.spinozabear.com
Website features a talking bear that
comforts cancer patient children.
Starbright Foundation: VIDEOS
WEB: www.starbright.org
Non-profit organization co-chaired
by Steven Spielberg and Norman
Schwarzkopf. The videos enable both
newly diagnosed teens and teen
survivors understand what it is like to
be frequently hospitalized by listening
to teens who have “been there and
done that.” The videos are done in a
tasteful, credible MTV style. Each film
is 15 minutes and is free to families
who have a teen with cancer. There is a
charge for the videos when purchased
by health professionals who intend
to use the films as springboards for
discussion in teen support groups and
as a training tool for professionals.
Starbright videos include:
Plastic Eggs
or Something!?: VIDEO
Success means we
go to sleep at night
knowing that our
talents and abilities
were used in a way
that served others.
-Marianne Williamson
WEB: www.oncolink.com/library/
article.cfm?c=1&s=2&id=613
Offers insight into and strategies
for dealing with hospital life, such
as making friends with the hospital
staff, dealing with the many boring
hours, and finding a little privacy in
the hospital. “Cracking Hospital Life”
addresses teenagers’ feelings about
the frustrations of a hospital stay.
Adolescent patients lament about the
hospital gowns, the food, the noisy
environment, roommates, and blood
draws, and discuss their concerns
about a lack of privacy and being
awoken in the middle of the night for
procedures. Teens also give each other
advice about optimizing their visit.
What Am I,
Chopped Liver?: VIDEO
WEB: http://www.oncolink.org/library/
article.cfm?c=1&s=2&id=603
Helps teens deal with their doctor in a
proactive and age-appropriate manner.
Tells teens that they have a right to
question their doctor’s practices and
teaches them that they not only can,
but should take an active part in their
treatment. Doctors of teens should
not look past the teen and speak only
to the parent; the film tells teens that
they have a right to expect a doctor
to speak directly to them about their
treatment.
The Trish Green Back to
School Program for Children
With Cancer: VIDEOS
Offers parents and educators several
resources to help integrate children
back into the classroom following
cancer treatment.” (From the BMT
Newsletter, May 2002.) Included in the
program are the “Why, Charlie Brown,
Why?” video, “With a Little Help from
my Friends” (a video for teens), “I’m
Still Me” (a video for young children),
Cancervive Teacher’s Guide for Kids
with Cancer (above), and Emotional
Aspects of Childhood Leukemia: A
Handbook for Parents. Most children’s
hospitals have the Trish Green Back to
School Program materials, or they can
be obtained from the local chapter of
the Leukemia and Lymphoma Society.
Access these resources if you or your
child’s hospital does not have them by
phoning 800-955-4572.
Understanding Childhood
Cancer: CD ROM
WEB: http://www.savvyknowledge.
com/products/health/cancer.html
helping children understand cancer
diseases, including leukemia, tumors,
blastoma, sarcoma, and Hodgkin’s
Disease. Experts from a wide variety
of professional disciplines have
contributed valuable information,
knowledge and expertise that is
useful in helping people make more
informed decisions about care and
management of childhood cancer.
Includes: Answers 200 commonlyasked questions, answered in everyday
language, with full color illustrations.
A drug database which lists the
names of all chemotherapy drugs,
pain control drugs, and anti-nausea
drugs, including both their brand and
pharmaceutical names, a description of
their intended effects, administration,
and side effects, listed by severity and
frequency. A glossary of cancer-related
terms. A cartoon character database
that allows children to visualize the
processes occurring inside their bodies.
Video interviews, with parents whose
children have had cancer, to provide
encouragement and sound advice to
help families through the difficult days
ahead. On-line help.
14 minutes. Appropriate for ages 9
to 14. Children who lost a parent or a
loved one discuss their feelings. Advice
on the four T’s (talk, touch, teach,
time) developed by Dr. Earl Grollman.
Batesville Management Services: 800446-2504, ext. 7788. ($99).
When Children Have Cancer:
VIDEO
WEB: www.whenchildrenhavecancer.
org/Videos/index.asp
A collection of stories about real
families that have faced some of the
same issues that now face your family.
Why, Charlie Brown, Why?:
VIDEO
WEB: www.amazon.com/WhyCharlie-Brown-Happens-Friend/
dp/0345455312
This video is about a child who’s friend
has cancer. Highly recommended
for younger school age children. It is
excellent for the child’s school and/or
other groups to view before your child
returns to regular activities. Contact
your local American Cancer Society
or Candlelighters chapter. Usually
available from Candlelighters 800-3662223 or the Leukemia Society 800-9554LSA.
Understanding Grief:
Kids Helping Kids: VIDEO
Camps & Vacation Retreats
It is recommended that you speak specifically with your child’s medical
team when considering a camp. Camps & retreats vary in the services
they offer, activities, length of stay, medical assistance and location. Most
camps are free-of-charge and some may provide additional travel cost
assistance for out-of-town campers. This list focuses on national camps
and vacation retreats.
Association of Cancer
Online Resources
Cancer Kid Camps
Section
WEB: www.acor.org/ped-onc/
cfissues/camps.html
Comprehensive list of Cancer Kid
Camps by state.
Each destination
you reach only
opens out into
wider horizons, new
and undiscovered
countries for you to
explore.
-Barbara Sher
General Kids Camps:
PHONE: 800-227-2345
WEB: www.cancer.org
Call the number above for camp
descriptions and the dates and locations
of the camps in your state.
B.A.S.E. Camp
140 N Orlando Ave. Suite 120
Winter Park, FL 32789-3679
PHONE: 407-673-5060
WEB: www.basecamp.org
Providing a year-round base of support
for children and parents facing the
challenge of living with cancer and
other life-threatening hematology
diseases. Serves brothers and sisters too.
Camp Good Days
Rochester Headquarters
Camp Good Days and Special Times
1332 Pittsford-Mendon Road
Mendon, NY 14506
PHONE: 800-785-2135
WEB: www.campgooddays.org
Campers have a chance to experience
all the traditional camping activities
such as hiking, sailing, fishing and
arts & crafts at our Keuka Lake facility.
Camp also features a Project Adventure
ropes course, a handicapped accessible
swimming pool, miniature golf course,
areas for music, nature and computers.
Camp Mak-A-Dream
Children’s Oncology
Camp Foundation
PO Box 1450, Missoula, MT 59806
PHONE: 406-549-5987
WEB: www.campdream.org
Cost-free camp program for children
and young adults with cancer. Offers
kids the opportunity to participate in
a variety of fun-filled camp activities,
learn new skills, form positive peer
relationships, and develop greater
independence and self esteem. The
camp is available on a priority basis to
children and young adults with cancer
their families. Located in Gold Creek
Montana, this camp supports families
throughout the U.S.
Camp Millenium
2876 Diamond Lake Blvd.
Roseburg, OR 97470
PHONE: 541-677-0600
WEB: www.campmillennium.org
A week filled with fun for kids who
spend too much time in hospitals and
clinics because of cancer. They share
in a variety of summer camp activities,
such as hiking, archery, swimming, arts
and crafts, horseback riding, music and
many other surprises. The goal of this
week-long adventure is to provide these
children with a camping experience that
can be extended into their everyday
lives. Serves the Pacific NW.
Camp Simcha
151 30th Street
New York, NY 10001
PHONE: 877-242-4543
WEB: www.chailifeline.org/
Camp offered to children ages 6 and
older with chronic illnesses. Preferences
are given to children undergoing active
or post treatment.
Camp Quality USA
Cancer Foundation
P.O. Box 498
PHONE: 800-366-2223
Provides comprehensive list of camps for
children with cancer.
Children’s Oncology Camps
of America, Inc.
PO Box 41433, Des Moines, IA 50311
PHONE: 515-669-4580
WEB: www.coca-intl.org
Provides normal life experiences for
children, their siblings, and their families.
Offers education, dissemination of
information and sharing of ideas and
concepts relevant to camping, childhood
cancer and the impact that the diagnosis
of childhood cancer has upon the family
and the child. Website offers camp links.
Friends Network
PO Box 4545, Santa Barbara, CA 93140
PHONE: 805-693-1017
WEB: www.kidscancernetwork.org
Provides a list of camps in your local area.
Hole in the Wall Gang Camp
565 Ashford Center Road
Ashford, CT 06278
PHONE: 860-429-3444
WEB: www.holeinthewallgang.org
In northeastern Connecticut, where
children with cancer or other serious
blood diseases do not have to sit on
the sidelines. Provides year-round
activities for campers and other seriously
ill children and their siblings. Campsponsored programs provide healthcare
professionals and social workers with
support and training. Retreats are
organized for the children’s parents at
resorts around the country offering
respite, counseling, mutual support, and
positive activities, free of charge.
National Sports Center
for the Disabled
1801 Bryant St, Ste 1500
Denver, CO 80204
PHONE: 303-293-5711
WEB: www.nscd.org
Each year, thousands of children and
adults with disabilities take to the ski
slopes, mountain trails and golf links to
learn more about sports and themselves.
With specially trained staff and its own
adaptive equipment lab, teaches a
variety of summer and winter sports to
individuals with almost any mental or
physical disability.
North American Riding
for the Handicapped Association
PO Box 33150
Denver, CO 80233
PHONE: 800-369-7433
WEB: www.narha.org
Promotes the benefit of the horse for
individuals with physical, emotional and
learning disabilities. For individuals with
disabilities, equine-assisted activities
have been shown to improve muscle
tone, balance, posture, coordination,
motor development as well as emotional
well-being.
Camps & Vacation Retreats
1444 Mockingbird Circle
Stow, OH 44224
PHONE: 330-671-0167
WEB: www.campqualityusa.org
15 free summer camps camps located
throughout the country for children
diagnosed with cancer. Each camper is
matched one-on-one with their own
volunteer adult Companion for the
entire week. The Companion provides
a helping hand and a listening ear
for children who are dealing with the
physical and emotional effects of cancer.
All camp activities are designed to allow
all campers to participate, regardless
of stamina level or secondary physical
handicap.
Silver Lining Foundation
1490 Ute Avenue, Aspen CO, 81611
PHONE: 970-925-9540
WEB: www.silverliningfoundation.org
Brings children together from all over
the world for an all expense paid week of
adventure in the therapeutically serene
mountains of Aspen. Participants go
white water rafting, horseback riding,
gondola rides up Aspen mountain, skiing
and make lifetime friends.
Special Love, Inc.
(Camp Fantastic)
Winchester, VA 22602, VA 22602
PHONE: 888-930-2707
Operates week-long camps and weekend
programs for children with cancer, ages
7 to 17.
Community Forums & Friends
Connecting with kids with cancer, other parents and siblings of kids with
cancer can be helpful and comforting. Online forums, penpal programs and
groups are listed here.
Kid / Teen
Support and
Community Forums
2bme
No one can give you
better advice than
yourself.
-Cicero
PHONE: 800-395-5665
WEB: http://2bme.org/2bMe.html
2bMe.org was created to give teens access
to the information they need to help them
“deal” without subjecting them to public
support groups that could potentially make
them uncomfortable. While browsing the
site, users have the option to privately
explore different aspects of their disease
on their own terms. The site presents
information in four different areas: “About
Face,” “Head Way,” “Health Esteem” and
“Social Circles,” which covers everything
from skincare and head wear to advice on
nutrition and dealing with friends.
4YOUth
WEB: listserv.acor.org/archives/4youth.html
List for young people who have or had
cancer. Parents of children with cancer
are not allowed in this group. The list is
overseen by an adult survivor of cancer
who has years of experience working with
young survivors of cancer.
Ability OnLine
250 Wincott Dr.
RPO PO Box 18515
Etobicoke, Ontario
M9R 4C8 Canada
PHONE: 866-650-6207
WEB: www.ablelink.org/public/new
Free internet community where children/
youth with disabilities/illness and their
parents can meet others like them, make
friends from all over the world, share their
hopes and fears, find role-models and
mentors, and feel like they belong.
Bandaids & Blackboards
WEB: www.lehman.cuny.edu/faculty/
jfleitas/bandaides/
This is a site about growing up with
medical problems Its goal is to help
people understand what it’s like, from the
perspective of the children and teens who
are doing just that. These kids have become
experts at coping with problems that most
of people have never heard of. They’d like
to share their stories and hope that you’ll
be glad you came to visit. The contents are
divided into three sections; one for kids,
one for teens, and one for adults.
Bravekids.org
1592 Union Street
PHONE: 415-561-2393
Supportive message boards for kids and
teens.
Cancer Kids
WEB: www.cancerkids.org
Helps children with cancer tell their stories
to the world! Offers resources, stories,
discussion forums, and helpful tips. Offers
links to wishing organizations, kid pages,
online bookstore, and memorials.
CanTeen
PHONE: 800-357-0012 ext. 3286065
E-MAIL: [email protected]
WEB: www.canteen.org.au
Australian site for kids and teens living
with cancer. Offers resources and promotes
understanding internationally.
CaringBridge
Chemo Angels
P.O. Box 1971
Julian, CA 92036
WEB: www.chemoangels.com
A volunteer organization dedicated to
adding a ray of sunshine to the lives of those
undergoing treatment for cancer. Patients
receive a little pampering from the Angels as
they go through a challenging experience. A
personal ChemoAngel will do his/her best to
bring a ray of sunshine into their life. Services
are provided through the postal mail and is
international.
Children’s Hopes
and Dreams Foundation
138 Cloudland Road
Dahlonega, GA 30533
PHONE: 201-361-7366
WEB: www.circ.uab.edu/sergg/s95/s95-9.htm
Matches children with chronic or lifethreatening illnesses between the ages of 5
and 17 with other children diagnosed with
chronic or life-threatening illnesses. The
program matches pen-pals by category of
illness, gender, and age.
Famous Fone Friends
9101 Sawyer Street
PHONE: 310-204-5683
WEB: www.famousfonefriends.org
Provides encouragement and friendship to
children who are hospitalized or homebound
due to illness or injury. Actors, athletes,
and musicians call children to help lift their
spirits. Call or write for information on
enrolling your child in this program.
For Teens Only
WEB: www.mskcc.org/mskcc/html/5316.cfm
Q&A, Advice from Teens and Sounding Board
that is a place for teens dealing with cancer
to express their feelings in poems, song
lyrics, or stories.
Gilda’s Club® Worldwide
48 Wall Street, 11th Floor
New York, NY 10005
PHONE: 888-445-3248
WEB: www.gildasclub.org
Provides meeting places where men, women
and children living with cancer, along with
their families and friends, can join with
others to build a personal network of social
and emotional support as an integral part
of cancer treatment. Free of charge and
non-profit, Gilda’s Clubs offer support and
networking groups, lectures and workshops,
specialized children’s programs and social
events, in a nonresidential and home-like
setting.
Group Loop
The Wellness Community
National Office - ATTN: grouploop
919 18th Street, NW, Suite 54
PHONE: 202-659-9709
WEB: www.grouploop.org
Online forum for teens with cancer
away from the daily pressures of classes,
after school activities, family and work
responsibilities, let alone treatment
schedules. Serves as a unique place for teens
with cancer to connect with other teens and
forge friendships while battling unwanted
aloneness, loss of control and loss of hope
associated with the disease.
1715 Yankee Doodle Road, Suite 301
Eagan, MN 55121
PHONE: 651-452-7940
WEB: http://www.caringbridge.org/
Free web pages to those receiving care
and hosts more than 15,000 personalized
CaringBridge pages. CaringBridge brings
together a global community of care
powered by the love of family and friends in
an easy, accessible and private way.
Honeysuckle Foundation for
Children with Cancer
P.O. Box 1491 Melville, NY 11747
PHONE: 631-847-7735
WEB: www.honeysucklefoundation.org
Emotional support for children diagnosed
with cancer and their families through
message boards, links to other resources,
fundraising ideas, ways to increase
community involvement and awareness.
Hugs and Hopes
P.O. Box 56 Harshaw, WI 54529
WEB: www.hugsandhope.org
For sick kids battling critical illness. Every
month they feature new stories and photos
of sick children on the website.
Visitors and volunteers pray for,
encourage, and send children cheery
postal mail (a.k.a.”happy mail”).
They also provide goodie
packages, wish granting, balloon
bouquets, and Christmas gifts.
Imerman Angels
400 W. Erie Street, Suite #405
Chicago, IL 60654
PHONE: 312-274-5529
WEB: www.imermanangels.org
Provides one-on-one cancer support:
connecting cancer fighters, survivors and
caregivers.
Kids Cancer Network
I’d rather be bald on
top than bald inside.
-Joe Garagiola
P.O. Box 4545
Santa Barbara, CA 93140
WEB: www.kidscancernetwork.org
Adult cancer survivor published an online
newsletter filled with ideas to provide “a
dose of hopeTM” for kids and their families
isolated by the rigors of childhood cancer
treatment. Inspirational stories and poems
written by children with cancer, along with
resources and helpful tips from families who
have been there.
Kids Healing Kids
P.O. Box 8292
Holland, MI 49422-8292
PHONE: 616-786-1895
WEB: www.kidshealingkids.com
Volunteer organization of children who
are cheerleaders for kids with catastrophic
illnesses. Free video tapes made by kids
offer inspiration and motivation to comfort
sick children. Tapes can be requested
through their website or by calling the
number above.
KidsCom
WEB: www.kidscom.com
A place for kids to chat, play games, write
stories, participate in polls, find pen pals,
share their voice, all while playing smart,
staying safe, and having fun online! Links
lead to fun games and activities.
KIDSAID
PO Box 3272
Ann Arbor, MI, 48106-3272
WEB: http://kidsaid.com/
Safe website for kids to help each other
deal with grief about their losses. It’s a place
to share and deal with feelings, to show
artwork and stories, to talk about pets,
and to meet with one’s peers. An Internet
community consisting of more than 30
e-mail support groups and two websites.
Offers links to griefnet, bookstores, library,
memorials, newsletters, and resources.
Lotsa Helping Hands
2 Clock Tower Place, Suite 610
Maynard, MA 01754
WEB: www.lotsahelpinghands.com
Create a free private, web-based community
to organize family, friends, neighbors,
and colleagues during times of need.
Easily coordinate activities and manage
volunteers with our intuitive group calendar.
Communicate and share information using
announcements, messages boards, and
photos.
Making Friends
7 Dogwood Road
Kings Park, NY 11754
PHONE: 631-979-7331
WEB: www.makingfriends.com
Offers creative activities for kids ages 2-12.
Serves as an online store targeted toward
children with fun ideas to keep them
interested.
On Top of Cancer
2400 Chestnut St. Suite 2908
WEB: www.ontopofcancer.org/kid_teen_
cancer.php
An online guide of websites and books for
young people with cancer. Information,
resources and support.
PatchWorx
WEB: www.patchworx.org
Provides a safe, secure, moderated, online
community for children who are seriously ill
or disabled, with games, puzzles, and more.
Make friends with common interests, and
interact with Patches, the mascot.
Planet Cancer
Send Kids the World
PHONE: 305-904-2771
WEB: www.sendkidstheworld.com
Website featuring kids with life
threatening illnesses and injuries that
enables people to reach out to them and
send them encouraging postcards from all
around the world.
Special Love
PHONE: 888-930-2707
Offers links to pen-pal programs.
Starbright World
WEB: www.starbrightworld.org
Online social network for teens with
chronic and life threatening medical
conditions, and their siblings. Having a
chronic illness or being a sick teen can
be pretty tough on your social life, which
is why the Starbright World community
was established for teens to connect with
other teens that are at home or in the
hospital. Starbright World is a product of
Starlight Children’s Foundation.
5900 Wilshire Blvd., Suite 2530
Los Angeles , CA 90036
PHONE: 310-479-1212
Dedicated to brightening the lives of
seriously ill children (ages 4-18) through a
pen-pal program.
Teens Living with Cancer
Melissa’s Living Legacy
Foundation
3111 Winton Road South
Rochester, NY 14623
PHONE: 585-334-0858
WEB: www.teenslivingwithcancer.org/
Dicussion Boards and forums for teens
with cancer. Website offers information
written for teens. Information includes:
Cancer Facts: What is Cancer, Your Gonna
Do What?, Dictionary, Body Issues, Stand
Up for Yourself, Just for kicks; Family
and Friends: Brothers and Sisters, Moms
and Dads, Best Friends, and other pages,
topics and links.
Ulman Fund
10440 Little Patuxent Parkway,Suite G1
Columbia, MD 21044
PHONE: 888-393-3863
Povides support programs, education,
and resources, free of charge, to benefit
young adults, their families and friends,
who are affected by cancer, and to
promote awareness and prevention of
cancer. Network that links young adults
and parents dealing with cancer for peer
support and to simply share information.
314 E. Highland Mall Blvd, Ste. 306
Austin, Texas 78752
PHONE: 512-452-9010
WEB: www.planetcancer.com
Website contains information for teens
and young adults with cancer including
topics such as: comics, real world advice,
books, music, videos, forum, news,
opportunities, resources, links, gatherings,
camps and support groups.
YouthNOISE
1255 Post Street, Suite 1120
PHONE: 415-346-4433
WEB: www.youthnoise.com
A group of young people from all 50
states, the District of Columbia and more
than 118 countries working together
with a group of adults working to provide
information from more than 300 nonprofit
partners to date that will spark youth
action. The mission is to inspire, connect,
and empower youth to help young
people everywhere by volunteering,
fundraising and speaking out. Information
on kids with cancer with links to other
resources.
Talia Seidman Foundation
PHONE : 215-519-1993
WEB: www.taliaseidman.com
The foundation focuses on bringing
educational environments to the child;
in the child’s hospital room or at home
if homebound through the use of video
conferencing technology. The children
are able to interact with their peers, an
interaction so necessary during this time
in their lives. It creates meaningful and
creative experiences that distract students
from the anguish of treatment and
provides stimulation to allow the brain to
function at a higher level.
Sibling Support and
Community Forums
Camp Comfort
Strength and
courage aren’t
always measured
in medals and
victories. They are
measured in the
struggles that they
overcome. The
strongest people
aren’t always the
people who win,
but the people who
don’t give up when
they lose.
-Ashley Hodgeson
Mt. Evans Hospice
3081 Bergen Peak Drive
Evergreen, CO 80439
PHONE: 303-674-6400
WEB: www.campcomfort.org
A weekend camp offered twice each
summer that addresses the special needs
of grieving children ages 6 to 12. Offers
children a supportive environment in
which they can gain an understanding of
grief and loss. Children learn ways to cope
with their grief through workshops and
activities, building skills that may help them
now and throughout their lives. Activities
are balanced with swimming, boating and
fishing.
P.O. Box 361, McLean, VA 22101
WEB: http://childhoodcancerguides.org/csibling.html
For parents regarding the emotional
responses of the siblings. An excerpt
is taken from Chapter 16 of Childhood
Leukemia: A Guide for Families, Friends, and
Caregivers by Nancy Keene. Also includes
stories by siblings.
Helping Siblings Cope
Children’s Hospital Boston
300 Longwood Avenue
Boston, MA 02115
PHONE: 617-315-6000
WEB: www.childrenshospital.
org/patientsfamilies/
Speaks to parents regarding
siblings of cancer patients
about: understanding the
problem, common reactions
of children when a sibling
has a serious illness such as
cancer, your goals, when to
get professional help, how to
get professional help, what
you can do to help seek help
in understanding your other
children, help siblings deal
with their feelings, possible
obstacles carrying out and
adjusting your plan.
OncoNurse.com
Patient-Centered Guides
1005 Gravenstein Hwy North
Sebastopol, CA 95472
PHONE: 800-998-9938
WEB: www.onconurse.com/
factsheets/siblings_cc.html
A mix of medical, practical
and emotional information,
told by people who have
been there.
Sibling Information Network
A.J. Pappanikou Center
University of Connecticut
62 Washington Street
Middletown, CT 06457-2844
PHONE: 860-344-7500
WEB: www.athealth.com/Consumer/
disorders/disabsibling.html
Network of parents and professionals
interested in siblings of children with
illnesses, injuries, or disabilities. This
organization serves as a clearinghouse
for information on research and
sibling support groups, and maintains
bibliographies of children’s literature
on various disabilities and audiovisual
materials.
Sibling Support Project
Don Meyer, Director
6512 23rd Ave NW, #213
Seattle, WA 98117
PHONE: 206-297-6368
FAX: 509-752-6789
WEB: www.siblingsupport.org
Seeks to increase the peer support and
information opportunities for brothers
and sisters of people with special needs
and to increase parents’ and providers’
understanding of sibling issues. Trains
local service providers on how to create
community-based peer support programs
for young siblings; hosting workshops,
listservs, and websites for young and
adult siblings; and increasing parents’ and
providers’ awareness of siblings’ unique,
life-long, and ever changing concerns
through workshops, websites, and written
materials.
SuperSibs!
5005 Newport Drive, Suite 502
Rolling Meadows, IL 60008
PHONE: 866-444-7427
WEB: www.supersibs.org
Reaches out to brothers and sisters of over
10,000 children who are diagnosed with
cancer each year. Siblings will feel valued,
validated, heard, supported and delighted
as recipients of SuperSibs! services and as
participants in SuperSibs! activities.
Teens Living with Cancer
Melissa’s Living Legacy Foundation
3111 Winton Rd. S.
Rochester, NY 14623
PHONE: 585-334-0858
WEB: www.teenslivingwithcancer.org
Website offers information written for
teens regarding being a sibling of a cancer
patient. Topics include: get information
on your siblings disease, Moms and Dads
section, join a discussion board, and other
articles written by siblings or teens with
cancer.
ListServes
Parents of children with cancer can find information
and emotional support by participating in an online
listserve. A listserve is simply a group of people who
communicate by email. For instance, a member of the
listserve (or “list” for short) posts an email to the list
address, and then all the members of the list receive
that email. Many disease specific list serves available on
ACOR: www.acor.org
Bravekids.org
1592 Union Street
PHONE: 415-561-2393
Online parent forum.
Day by Day
WEB:http://health.groups.yahoo.com/group/DayByDay
Yahoo group created to support the parents of children
whose child died from cancer, and also to parents
whose children have exhausted treatment options and
are in hospice care.
iVillage.com
WEB: yourtotalhealth.ivillage.com/pediatric-cancer
Message boards for parents and caregivers of
cancer patients.
Meet Up
WEB: www.meetup.com/
The world’s largest network of local
groups. Search by City or zip Code.
Many support groups for parents.
OncoChat
WEB: www.oncochat.org/
Real-time global support community
for people whose lives have been
touched by cancer.
Wellness Community
919 18th St. NW Ste. 54
Washington DC 20006
PHONE: 202-659-9709
Online forums with many support
and discussion groups.
Yahoo Groups
Parent Support and
Community Forums
WEB: www.groups.yahoo.com
Free online meeting place for people with
shared interests. Has many cancer-related
groups.
Odds & Ends
From hats to dolls to humor...helpful, unique and even fun
resources that didn’t fit neatly into any one category.
Alex’s Lemonade Stand
ChemoCare Head Wear
Angels for Hope
The Children’s Art Project
BeauBeau: Beautiful Scarves
for Beautiful Heads
Fuzzy Feet Foundation
WEB: www.alexslemonade.org
Evolved from a young cancer patient’s
front yard lemonade stand to a
nationwide fundraising movement to find
a cure for childhood cancer. Resources
to support kids who want to have a
lemondae stand to raise money for cancer
research.
WEB: www.angelsforhope.org
Offers free crocheted angels, butterflies
and smiley faces to anyone who needs
some encouragement and hope!
Happiness is a state
of going somewhere
wholeheartedly,
without regret or
reservation.
-William H. Sheldon
WEB: www.childrensart.org
Sells innovative products based on the
artwork of pediatric patients at M. D.
Anderson in Texas.
Bonnets for Babes
81 East Knox Road
Beaverton, MI 48612
PHONE: 989-709-6451
WEB: www.cottontail-heirloomquilts.com
Cute bonnets for children undergoing
chemotherapy. Free at some hospitals,
also for sale.
P.O. Box 13443
Scottsdale, AZ 85267-5727
PHONE: 800-543-9103
WEB: www.fuzzyfeet.org
To bring comfort to as many hospitalized
children between the ages of birth to 18
throughout the USA by providing slippers
through the generosity of our donors.
Fuzzy’s secondary goal is to provide
slippers to children in orphanages and
homeless shelters throughout the USA
and abroad. Fuzzy Feet plans to distribute
10,000 slippers this year through the
foundation and the Fuzzy Feet Friends
Program.
Changing Images Art Foundation
Happy Hats for Kids
WEB: www.4women.com
Fun, fashionable, and comfortable
alternative to wearing a wig. Beautiful
and unusual fabrics for women and
children. Lots of styling options!
PO Box 244
Towaco, NJ 07082
PHONE: 973-402-0842
WEB: www.changingimages.org
Dedicated to bringing comfort to
persons, both young and young-atheart, who are in traditional institutional
settings. By providing a supervised
interactive art activity, we are able to
transform bleak, empty walls into colorful
surroundings, leaving each facility with
professional looking murals that they
help create.
PHONE: 586.202.0328
WEB: www.chemocareheadwear.com
Hats, Turbans, Sleep Caps, Wigs, Mouth
Care, Undershirts and Swim Caps for
those dealing with medical hair loss due
to chemotherapy, radiation, alopecia or
burns.
24 Dapplegray Ln.
Rolling Hills Estates, CA 90274
PHONE: 310-326-8409
WEB: www.happyhatsforkids.com
Hats, Scarves and More
WEB: www.hatsscarvesandmore.com
Quality head coverings for women, men,
teens and children with hair loss due to
cancer, chemotherapy and other medical
conditions.
Hats By Emmanuel
WEB: www.hatsbyemmanuel.com
Hat designer Linda Finstad has designed
a complete line of hats and sleep caps for
children experiencing hair loss through
chemotherapy.
E-MAIL: hatdrivecoordinator@
hatssoffforcancer.org
WEB: www.hatsoffforcancer.org
Provides hats to children with cancer.
Headcovers Unlimited
WEB: www.headcovers.com
A company owned by a breast cancer
survivor and her daughter. Wigs and hats
in children’s sizes.
Headhuggers
1006 Auckland Way
Chester, MD 21619
PHONE: 410-643-5767
WEB: www.headhuggers.org
Free patterns for chemo caps.
Heavenly Hats
WEB: www.heavenlyhats.com
Collects and distributes brand new hats
of all kinds to those heroes of all ages
who lose their hair due to the treatment
of cancer or the many other medical
conditions which may cause hair loss.
They get hats donated in large quantities,
so your hospital, treatment center or
doctor’s office can request a donation for
you and all your clinic friends.
Hoping Skills Company
140 Elliott Street, Suite 3
Beverly, MA 01915
PHONE: 888-815-HOPE
WEB: www.hopingskills.com
Gift baskets and keepsakes that honor life
and give hope during times of illness and
loss for adults and children of all ages.
Humor Project Inc., The
480 Broadway, Suite 210
Saratoga Springs, NY 12866
PHONE: 518-587-8770
WEB: http://www.humorproject.com/
The mission is to make a difference by
being a unique, pioneering, and cuttingedge organization that touches the
lives of individuals, organizations, and
nations. They seek to help people get
more ‘smileage’ out of their lives and
jobs by applying the practical, positive
power of humor and creativity. Website
topics include: programs, conferences,
publications, bookstore, and discussion
board.
I’m a Kid Foundation
WEB: www.imakid.org
Supporting children with medically
related hair loss due to cancer, alopecia,
or other ailments.
The Jared Box
129 Fenwick Drive, Port Matilda, PA 16870
PHONE: 814-353-9343
WEB: www.thejaredbox.com
Lifting the spirits of chronically ill
children, this group honors the memory
of six year old Jared who fought a brain
stem tumor. Boxes are assembled and
delivered to medical facilities.
Odds & Ends
Hats Off For Cancer
Komfy Kids
PHONE: 702.269.KIDS
WEB: www.komfykids.com
Offers hats and wigs, and also therapeutic
dolls for kids who experience hair loss.
Look Good...Feel Better
c/o CTFA Foundation
1101 17th Street NW, Suite 300
PHONE: 202-331-1770
WEB: www.lookgoodfeelbetter.org/
audience/teens/program.htm
A free national public service program
dedicated to teaching young and
adult women cancer patients beauty
techniques to help restore their
appearance and self-image during
chemotherapy and radiation treatment.
LGFB offers group or individual sessions
conducted by trained and certified
cosmetologists, complimentary makeup
kits for patients participating in a group
program, and free materials such as video
tapes and pamphlets.
Locks of Love
234 Southern Blvd.
West Palm Beach, FL 33405
PHONE: 561-833-7332
WEB: www.locksoflove.org
Provides hairpieces to financially
disadvantaged children in the United
States and Canada under age 18 suffering
from long-term medical hair loss from any
diagnosis.
Mad Capz
WEB: www.madcapz.net
A commercial site with some hats for kids.
National Odd Shoe Exchange
3200 North Delaware Street
Chandler, AZ 85225
PHONE: 480-892-3484
WEB: www.angelfire.com/in2/oddshoes
A non-profit shoe exchange for amputees
or people with odd shoe sizes * WEB site
available in French.
Project Linus
PO Box 5621
Bloomington, IL 61702-5621
PHONE: 309-454-1764
FAX: 309-454-1768
WEB: www.projectlinus.org
Donates handmade security blankets,
quilts, and afghans to children
undergoing difficult medical situations.
Quilts of Love
WEB: www.quiltsoflove.com
Graphic quilts are created for a children
with a personal touch and uploaded to
the internet so that family and friend
may visit it anytime. All the work is free
by volunteers. E-mail is the preferred
way to contact the organization.
Shadow Buddies
PHONE: 1-888-BUDDIE1
WEB: www.shadowbuddies.org
Soft doll friends for kids and resource
packets for medical caretakers. 21
illnesses have their own symptom and
treatment specific buddies - oncology
being one of them.
Songs of Love Foundation
PO Box 750809, Forest Hills, NY 11375
PHONE: 800-960-7664
WEB: www.songsoflove.com/
A way of providing sick children with a
source of inspiration, joy, and possibly
even healing, he set out to create
personalized one-of-a-kind songs for
them. They have produced intimate
musical portraits(which are never
duplicated) for thousands of children
and teens.
Studio International
2850 22nd St, San Francisco, CA 94110
PHONE: 415-641-9447
WEB: www.studiohair.com
Salon based in San Francisco that
specializes in working with those
suffering from hair loss due to medical
treatments. There’s also a full service
on-line salon. Studio International offers
a complete line of hair prosthesis, wigs
and turbans which are also available
on-line.
Stylish Noggins
WEB: www.stylishnoggins.com
This commercial site, not cancer-specific,
has a nice selection of soft, cute hats for
kids. They also sell appliqués that can be
added to the hats.
Taybears
WEB: www.taybearhugs.org
Taylor Crabtree was featured in the
LandsEnd catalog for kids as a young
hero. Taylor started her organization
which sends teddy bears out in bulk to
hospitals because of her grandmother’s
fight with cancer. You can nominate
your hospital to receive a box of Taylor’s
teddy bears by emailing her at or having
your hospital send a request on her
website.
Wigs for Kids
Executive Club Building
21330 Center Ridge Road, Suite 26
Rocky River, OH 44116
PHONE: 440-333-4433
WEB: www.wigsforkids.org
Provides information on hair loss and
links to sites for wigs.
ZanyBrainy.com
A Zillion Neat Things for Kids
WEB: http://www.zanybrainy.com
Website full of neat stuff for kids.
Guaranteed high-quality, safe, nonviolent, and lots of fun.
This section addresses the comprehensive needs of survivors and
the long-term effects of cancer treatments. Many survivors and
their families continue to confront the complex and life-long issues.
This section offers information and services to help cope with these
issues. Also check the disabilities section for an expanded list that
may be helpful.
PHONE: 1-800-227-2345
WEB: www.cancer.org/docroot/home
A nationwide, community- based
voluntary health organization. The
website has cancer survivor information
with information such as: special needs
and interests, learn to develop healthy
habits now that your treatment is over,
and connect with other survivors and find
opportunities to volunteer and donate.
American Institute for Cancer
Research
1759 R Street, NW
PHONE: 800-843-8114
WEB: www.aicr.org
Provides information about cancer
prevention, particularly through diet,
physical activity, and weight management.
Nutritional information available for
cancer patients that are in treatment and
those that have completed treatment.
Offers a toll-free nutrition hotline,
quarterly newsletter, public seminars,
and funding of research grants. Has
a wide array of consumer and health
professional brochures. Produces
CancerResource, a guide that consists
of a package of publications that helps
newly diagnosed cancer patients and their
families understand more about cancer,
its treatment, dietary factors associated
with cancer and its treatment, and other
resources.
Life After Cancer
Life After Cancer
Beyond the Cure
St. Louis, MO 63102
PHONE: 800-532-6459
WEB: www.beyondthecure.org
Provides information pertaining to all
areas of the survivor’s life. The Late-Effects
Assessment tool allows you to build an
assessment of late effects specific to your
diagnosis and treatment.
Cancer Hope Network
2 North Road, Suite A
Chester, NJ 07930
PHONE: 887-467-3638
WEB: www.cancerhopenetwork.org
Free, confidential, one-on-one support
to people with cancer and their families.
Matches patients with trained volunteers
who have themselves undergone a similar
experience. Provides support and hope, to
help patients and families look beyond the
diagnosis, cope with treatment, and start
living life to its fullest once again.
Cancer Information and
Counseling Line
1600 Pierce Street, Denver, CO 80214
PHONE: 800-525-3777
WEB: www.amc.org
National free telephone counseling service
designed to help recently diagnosed
cancer patients, cancer patients who are
in or who have finished treatment, family
members and friends, and members of the
public. Professional counselors provide
up-to-date medical information, emotional
support through short-term counseling,
and national and local resource referrals to
callers.
The Cancer Project
5100 Wisconsin Avenue, NW, Suite 400
Washington , DC 20016
PHONE: 202-244-5038
WEB: www.CancerProject.org
Provides classes, books, video
programs, fact sheets, brochures, and
other educational materials on cancer
prevention and survival. The organization
also conducts research studies to
investigate dietary issues and publicize
the need for cancer prevention and the
value of healthy diet changes. The Cancer
Project’s free hands-on nutrition classes
(Food for Life) help cancer survivors and
their families learn new tastes and easy
food preparation skills.
Cancer Survivors Network
WEB: www.acscsn.org
Web-based service for cancer survivors,
their families, caregivers, and friends. A
noncommercial, private, secure way to
find and communicate with others who
share your interests and experiences.
Membership is free, but in order to access
all areas of CSN, registration with a valid
e-mail address is required. Services
provided include discussion boards and
access to chat rooms; ability to create
your own “CSN My Space” where you
can tell your story, blog, or recommend
resources and get a free monthly
newsletter.
Cancer Survivor’s Toolkit
A great life is the
sum total of all the
worthwhile things
you’ve been doing
one by one.
-Richard Bach
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-9127
PHONE: 888-622-7937
FAX: 301-565-9670
WEB: www.canceradvocacy.org/toolbox/
Free downloadable information
developed by leading cancer
organizations to help people develop
important skills to better meet and
understand the challenges of their illness.
The program contains a set of basic skills
to help navigate a diagnosis and special
topics on key issues faced by people with
cancer. Free CD version available.
CancerSurvivors.org
WEB: www.cancersurvivors.org
Cancer information, resource, and
support to all who ask. The authors are
four cancer survivors. They share stories
to illustrate that there is productive,
quality life after a diagnosis of cancer.
CancerVive
11636 Chayote St.
PHONE: 800-470-cure, 310-203-9232
FAX: 310-471-4618
WEB: www.cancervive.org
Assists cancer survivors to face and
overcome the challenges of life after
cancer. Organization offers survivors
support groups in California, Illinois,
New York City and Texas. Also involved
in fundraising and advocacy for cancer
survivors.
Candlelighter’s Childhood Cancer
Foundation
PO Box 498
PHONE: 800-366-2223
FAX: 301-962-3521
WEB: http://www.candlelighters.org
Helps families cope with the emotional
stresses of their experiences.
P.O. Box 361
McLean, VA 22101
WEB: http://childhoodcancerguides.org/
survivors.html
Creates, publishes, and updates books
that help families of children with cancer
and survivors of childhood cancer.
Cure Search
National Childhood Cancer Foundation
4600 East West Highway, Suite 600
PHONE: 800-458-6223
WEB: www.curesearch.org/for_parents_
and_families/
Focuses on wellness and ways to improve
quality of life. Discover ways to maintain
a healthy lifestyle, signs to look for,
potential risks and ways to celebrate the
life of a child with cancer.
Exceptional Cancer Patients
522 Jackson Park Drive
Meadville, PA 16335
PHONE : 814-337-8192
WEB: www.ecap-online.org/
Founded in 1978 by Bernie Siegal, M.D.,
author of Love, Medicine and Miracles
and other books. Siegal is one of the
most famous, and still controversial,
advocates of mind-body approaches
to cancer which “help people find the
strength to grow and change in the face
of serious health problems”. Provides
individuals and group counseling for
patients, families, and cancer survivors.
4419 Coldwater Canyon Ave, Suite I
Studio City, CA 91604-1479
PHONE: 818-508-5657
WEB: www.vitaloptions.org
A weekly syndicated call-in cancer talk
show linking patients, survivors, and
health care professionals.
I Can Cope
PHONE: 800-227-2345
WEB: www.cancer.org/docroot/ESN/
content/ESN_3_1X_I_Can_Cope.asp
I Can Cope is a program of the
American Cancer Society (ACS). It
provides support for cancer patients
and their loved ones on topics such as
diagnosis and treatment, side effects of
treatment, emotions and self-esteem,
cancer and intimacy, communication
skills, community resources, financial
concerns, pain management, nutrition,
and fatigue. The program offers courses
that are designed to increase the
knowledge, positive attitude and skills
of cancer patients and families.
Intercultural Cancer Council
Baylor College of Medicine
Suite #1025
1709 Dryden Road
Houston, TX 77030-3411
PHONE: 713-798-4617
WEB: www.iccnetwork.org
Dedicated to ensure that all Americans,
particularly minorities, the medically
under served and cancer survivors
have facilitated access to the health
care system. Care must include cancer
prevention, detection, diagnosis,
treatment, rehabilitation, mental health,
and long-term care services.
International Cancer Alliance for
Research and Education
PHONE: 301-656-3461
WEB: www.icare.org
Offers several unique patient-centered
programs linked with top physicians and
scientists from around the world. Offers
links to a cancer survival guide, diseasespecific information, latest treatments,
and medical breakthroughs.
Life After Cancer Care
M.D. Anderson Cancer Center
1515 Holcombe Blvd
Houston, TX 77030
PHONE: 800-392-1611
WEB: www.mdanderson.org/
departments/lacc/
Medical clinic that specializes in
survivors: those who have won their
fight against cancer, but who may be
facing health problems as a result of
their cancer or cancer treatment.
Lance Armstrong Foundation
2201 E. Sixth St , Austin, TX 78702
PHONE: 866-673-7205
FAX: 512-236-8482
WEB: www.livestrong.org
LAF provides the practical information
and tools people living with cancer need
to live strong with four core program
areas including education, advocacy,
public health, and research.
Life After Cancer
The Group Room
Vital Options International
National Coalition of Cancer
Survivorship
Silver Spring, MD 20910
PHONE: 888-650-9127
WEB: www.canceradvocacy.org
Advocate for quality cancer care for
all Americans. Helps you know what
questions to ask and resources you need
to cope with your medical, financial,
emotional, spiritual and family’s needs
following a cancer diagnosis.
NCI Public Inquiries Office
6116 Executive Boulevard
Room 3036A
PHONE: 800-422-6237
TTY: 800-332-8615
WEB: www.cancer.gov/
Website contains information from the
Office of Cancer Survivorship (OCS),
which conducts and supports research
that both examines and addresses
the long and short-term physical,
psychological, social, and economic
effects of cancer and its treatment
among pediatric and adult survivors of
cancer and their families.
National Cancer Survivors
Day Foundation
PO Box 682285
Franklin, TN 37068-2285
PHONE: 615-794-3006
WEB: www.ncsdf.org
Organizes Survivors Day, an annual,
nationwide celebration of life for
cancer survivors and their loved ones,
and health care professionals. It is
celebrated on the first Sunday in June.
National Coalition
for Cancer Survivorship
Silver Spring, MD 20910-9127
PHONE: 888-650-9127
FAX: 301-565-9670
WEB: www.canceradvocacy.org
Promote a national awareness of issues
affectings cancer survivors; serves as
a clearinghouse for information on
services and materials for survivors;
advocates the rights and interests of
cancer survivors; encourage the study of
survivorship; promote the development
of cancer support activities. Developed
the Cancer Survivors Almanac of
Resources, a comprehensive guide to
finding resources for legal concerns
(including employment and insurance),
medical treatment, emotional
support, self-help, and family issues.
The Cancer Survivors Toolkit is also
available through NCCS. This is a series
of audio tapes to help people with
cancer advocate for themselves and
communicate their needs.
National Information
Center
for Children & Youth
with Disabilities
PO Box 1492
PHONE: 800-695-0285
FAX: 202-884-8441
WEB: http://www.nichcy.org
Information and referral to assist
parents, educators, caregivers,
advocates, and teachers in helping
children and youth with disabilities
participate as fully as possible at school,
at home, and in their community. The
center answers questions, matches
families with common concerns, and
maintains a database of information.
Free pamphlets and information on
disabilities and the rights of disabled
children and their parents are available.
National Rehabilitation
Information Center
8201 Corporate Drive, Suite 600,
Landover, MD 20785
PHONE: 800-346-2742
TTY: 301-459-5984
WEB: www.naric.com
Information center focusing on disability
and rehabilitation issues and research.
Provides reference and referral services,
as well as custom database searches of
the REHABDATA bibliographic database.
Provides information on prosthetics,
equipment and supplies. NARIC also
produces the REHABDATA database,
a free newsletter on disability and
rehabilitation research and resources
and free resource guides.
Office of Cancer Survivorship
6130 Executive Blvd. Room 6134
Executive Plaza North
Rockville, MD 20852
PHONE: 800-422-6237
FAX: 301-594-6787
WEB: www.cancercontrol.cancer.gov/ocs
The NCI established the Office of Cancer
Survivorship in order to provide a
focus within the National Institutes of
Health for the support of research and
education aimed at professionals who
deal with cancer patients and survivors,
and the survivors themselves.
ONCO LINK
WEB: http://www.oncolink.org
An electronic library of cancer
information, established by University of
Pennsylvania Medical Center. Includes
explanations of cancer causes and
treatments, clinical trail news, cancer
related poetry and art.
Post-Treatment
Resource Program
Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, NY 10021
PHONE: 800-525-2225
FAX: 212-639-5954
WEB: www.mskcc.org/mskcc/
html/11984.cfm
Resource center dealing with quality
of life issues for former patients, and
their family members, who have
R.A. Bloch Cancer Foundation
4435 Main St
PHONE: 800-433-0464
FAX: 816-854-8024
WEB: http://www.blochcancer.org
Hotline that matches newly diagnosed cancer
patients with someone who has survived the
same kind of cancer. Offers free information,
resources and support groups.
in the field of oncology, and social gatherings all with laughter, joy and hope. Call the national
phone number above for a local location.
Life After Cancer
completed cancer treatments. Services
include: an on-going community education
program consisting of seminars, workshops and
open-house meetings; individual, family and
group counseling; insurance & employment
information, advice and advocacy; and a lending
library; screening and referral for vocational
counseling and training; “Moving Forward After
Treatment”
- a group for head and neck and oral cancers.
Studio International
2850 22nd St
PHONE: 415-641-9447
WEB: www.studiohair.com
Salon based in San Francisco that specializes
in working with those suffering from hair loss
due to medical treatments. There’s also a full
service on-line salon. Studio International offers
a complete line of hair prosthesis, wigs and
turbans which are also available on-line.
Wellness Community
919 18th Street N.W., Suite 54
Washington DC 20006
PHONE: 888-793-9355
The Wellness Community is a non-profit
organization whose mission is to help people
with cancer and their families enhance
their health and well-being by providing a
professional program of emotional support,
education and hope. The Wellness Community
provides a full range of support services
to cancer patients and their families in a
comfortable home-like setting, completely free
of charge. Services include: drop-in and ongoing support groups, networking groups for
specific types of cancer, educational workshops,
stress management sessions, lectures by experts
Notes:
End of Life Support
End of Life Support
Nothing in life prepares us for a terminal diagnosis of our child.
The very ground which we depend on for stability falls away
and our life is spinning out of control. Grief is a long, painful,
and arduous process. There is no right or wrong way to grieve,
just your way. Your courage and perseverance has guided you
this far and it will lead you through the unknown journey that is
unfolding. This section offers resources of compassion, comfort,
and support as well as information about in-home hospice care
and memorializing the inspiring life of your child.
End of Life Support | 101
Compassionate Care Resources
Compassionate resources, comfort care, education, support,
and guidance for end of life care.
Abledata
PHONE: 800-227-0216
TTY: 301-608-8912
Provides information on thousands of
assistive devices for home health care,
from eating utensils to wheelchairs.
Provides prices, names, and addresses of
suppliers.
I learned that
inspiration does not
always come like a
bolt, nor is it kinetic,
energetic, striving,
but it comes into us
slowly and quietly
and all the time.
-Brenda Ueland
American Academy of Hospice and
Palliative Medicine
4700 W. Lake Ave.
Glenview, IL 60025-1485
PHONE: 847-375-4712
FAX: 847-375-6475
WEB: www.aahpm.org
Physicians and other medical professionals
dedicated to excellence in palliative
medicine, the prevention and relief of
suffering among patients and families by
providing education and clinical practice
standards, fostering research, facilitating
personal and professional development of
its member and by public policy advocacy.
American Academy
of Pain Management
13947 Mono Way #A
Sonora, CA 95370
PHONE: 209-533-9744
Fax: 209-533-9750
EMAIL: aapm@
aapainmanage.org
WEB: www.aapainmanage.
org
Provides credentialing to
practitioners in the area of
pain management. Offers
information of managing
pain in a home care
environment and offers
resources and links to
other related information.
102 | End of Life Support
American Association
for Homecare
2011 Crystal Drive, Suite 725
Arlington, Virginia 22202
PHONE : 703-836-6263
FAX: 703-836-6730
WEB: www.aahomecare.org
Represents the home medical equipment
and homecare industries.
Americans for
Better Care of the Dying
1700 Diagonal Road, Suite 635
PHONE: 703-647-8505
WEB: www.abcd-caring.org
Focuses efforts on fundamental reforms;
such as, improved pain management,
better financial reimbursement systems,
enhanced continuity of care, support for
family caregivers, and changes in public
policy.
Association of Maternal
and Child Health Programs
2030 M Street, NW, Suite 350
PHONE: 202-775-0436
WEB: www.amchp.org
Provides financial grants to states for direct
medical and related services for children
with disabilities, including chronic and
terminal illnesses. Every state has its own
plan. You can contact this organization for
information on your child’s eligibility for
services as well as information on state
specific programs.
Beyond Indigo
Death and Dying
WEB: www.beyondindigo.com
Information and support for families who
are living with terminally ill children. Offers
sections on grief, memorializing, coping
and self care.
3841 North Freeway Blvd., #225
Sacramento, CA 95834
PHONE: 916-925-3770
FAX: 916-925-3780
WEB: www.calhospice.org
The organization advocates for those
facing life-threatening illnesses by
promoting availability and access to
quality end-of-life care.
Serves California and Nevada.
Caregiver Survival Resources
3350 Griffin Road
Ft. Lauderdale, FL. 33312
PHONE: 800-829-2734
FAX: 954-893-1779
WEB: www.caregiver.com
A comprehensive list linking caregiving
information and services for general
issues and specific chronic illnesses.
Children’s Hospice International
1101 King Street, Suite 360
PHONE : 800-242-4453
WEB: www.chionline.org
Provides support to children with
life-threatening conditions and their
families through referral and information
services. Promotes hospice support
through pediatric care facilities, to
encourage the inclusion of children
in existing and developing hospice/
homecare programs and to include
the hospice perspectives in all areas of
pediatric care.
CureSearch.org
440 E. Huntington Drive, Suite 400
Arcadia, CA 91066
PHONE: 800-458-6223, ext. 196
WEB: www.curesearch.org/
parentsfamilies/
Website provides resources and
techniques to help in this most difficult
of times when the focus is on providing
both physical and emotional comfort to
a child and their family, and discovering
ways to preserve their dignity and
memory. Links include: palliative care,
hospice, talking with your child.
Home Care Guide
for Advanced Cancer
WEB: www.acponline.org/patients_
families/end_of_life_issues/cancer/
A comprehensive guide for family,
friends and hospice workers caring for
persons with advanced cancer at home,
when quality of life is the primary goal.
Hospice Education Institute
and HospiceLink
3 Unity Square
Machiasport, ME 04655
PHONE: 800-331-1620
FAX: 207-255-8008
WEB: www.hospiceworld.org
Information about hospice and palliative
care nationwide. Provides cancer patients
and their families with referrals to local
hospice programs and publications.
End of Life Support
California Hospice &
Palliative Care Association
Hospice Foundation of America
1621 Connecticut Ave., NW, Suite 300
PHONE: 800-854-3402
WEB: www.hospicefoundation.org
Information on hospice care, how to
select a hospice team, locations of a
hospice near you, philosophies, and
care standards. Free publications are
available.
Hospice Net
401 Bowling Avenue, Suite 51
Nashville, TN 37205
WEB: www.hospicenet.org
Information and links for families
facing life-threatening illness. Sections
for caregivers, pain management,
bereavement, and helping kids
understand and cope.
National Association
for Home Care
228 Seventh St. SE
PHONE : 202-547-7424
FAX: 202-547-3540
WEB: www.nahc.org
Information on home care and hospice.
Offers referrals to local bereavement
support groups in your area.
Growth House, Inc.
2215-R Market Street, #199
WEB: www.growthhouse.org
An online community for end of life care.
Offering resources for life-threatening
illness and end of life care with hopes to
improve the quality of compassionate
care for people who are dying. Links to
home care, pain management, quality of
life issues and grief.
National Family
Caregivers Association
10400 Connecticut Ave #500
PHONE: 800-896-3650
FAX: 301-942-2302
WEB: www.nfcacares.org
Education, support, respite care
and advocacy for caregivers. Their
toll free information line provides
referrals to caregiver support groups
and a resource guide. Distributes a
newsletter with practical tips on
care giving.
National Hospice
& Palliative Care Organization
In each of us there
are places where
we have never gone.
Only by pressing the
limits do you ever
find them.
-Dr. Joyce Brothers
1731 King Street, Suite 100
Alexandria, Virginia 22314
PHONE: 800-658-8898
WEB: www.nhpco.org
An association of groups that provide
hospice care. Designed to promote
and maintain hospice care and to
encourage support for patients and
family members. Information about
hospice concepts is also available.
Provides local referrals.
Visiting Nurse
Association of America
900 19th St, NW, Suite 200
PHONE: 202-384-1420
WEB: www.vnaa.org
Provides callers with names of local
visiting nurse associations. More
that 500 nonprofit visiting nurse
associations provide community-based
home care services, including skilled
nurses, therapists, and home health
care aids.
The following organizations focus on coping with grief and loss.
They can provide information, books and resources.
Alive Alone
1112 Champaign Drive
Van Wert, OH. 45891
WEB: www.alivealone.org
Bi-monthly newsletter for parents
who are now childless. Alive Alone
is an organization for the education
and charitable purposes to benefit
bereaved parents, whose only child or
all children are deceased, by providing
a self-help network and publications to
promote communication and healing,
to assist in resolving their grief, and
a means to re-invest their lives for a
positive future.
All Kids Grieve
WEB: www.allkidsgrieve.org
A site that gives access to individuals,
organizations, materials, and ideas that
facilitate the possibility of growing
through loss and grief for kids and the
adults who care for them.
American Hospice Foundation
Grief Zone
2120 L Street, NW, Suite 200
PHONE: 800-347-1413
FAX: 202-223-0208
WEB: www.americanhospice.org/
griefzone
Promotes hospice programs and
services nationwide, focusing on
schools, work environments, and
healthcare systems.
American Self-Help
Clearinghouse
WEB: www.mentalhelp.net/selfhelp/
Provides current information and
contacts for national self-help groups.
Gives address and profiles for over 700
national support groups. Supports
caller in forming a group if none exists.
Publishes Self-Help Source Book.
Association for Death and
Education and Counseling
111 Deer Lake Road, Suite 100
Deerfield, IL 60015
PHONE: 847-509-0403
FAX: 847-480-9282
WEB: www.adec.org
2000 members are made up of a wide
array of mental and medical health
personnel, educators, clergy, funeral
directors, and volunteers. Offers
numerous educational opportunities
through its annual conference, courses
and workshops, its new certification
program, and via its acclaimed
newsletter, The Forum.
End of Life Support
Grief & Bereavement
Baby Steps
182-1054 Centre Street
Thornhill, Ontario
L4J-8E5 Canada
PHONE: 905-707-1030
WEB: www.babysteps.com
Provides grief resources for families
and kids. Offers bereavement sharing
rooms, remembrance rooms for the
bereaved and a bereavement resource
center.
Bereaved Parents of the USA
PO Box 95
Park Forest, IL 60466
PHONE: 708-748-7866
WEB: www.bereavedparentsusa.org
Educates families about the grief
process as it applies to the death
of a child at any age and from any
cause; aids and supports those who
are suffering such a loss; supplies
telephone numbers of other bereaved
parents, siblings and grandparents
who are able to offer support to
other more newly bereaved families;
informs and educates members of the
healthcare community who interact
with bereaved parents.
Camp Heaven
WEB: www.campheaven.com
Site devoted to bridging the gap
between earth and heaven and
the gap between grieving parent
and departing child. Link to The
Indestructible Spirit – a photo journal.
Cancer Care, Inc.
275 7th Ave
New York, NY 10001
PHONE: 800-813-4673
Service programs include group,
individual, family and bereavement
counseling (in person, online and
through telephone). Information and
referral to local community resources.
Supplementary financial assistance for
home care, transportation and pain
medication. Volunteer visitor program,
community education for the public on
site, on line and through teleconference
programs. Technical assistance to
professionals regarding psychosocial
aspects of cancer. African-American and
Hispanic Outreach program.
Cancer Counseling, Inc.
4101 Greenbriar, Suite 317
Houston, TX 77098
PHONE: 877-224-8447
FAX: 713-520-9288
WEB: http://www.cancercounseling.info/
Provides free professional counseling
and educational programs to cancer
patients, their loved ones, professionals,
and the public. Publishes numerous
educational materials and a newsletter.
Psychiatrists, psychologists, and social
workers conduct individual, family, and
group counseling sessions.
Trust in your own
untried capacity.
-Ella Wheeler Wilcox
Cancer Foundation
10400 Connecticut Ave, Suite 205
Kensington, MD 20895
PHONE: 800-366-2223,
FAX: 301-962-3521
Organization formed by parents of
young cancer patients to help families
their experiences. Programs to assist
National pediatric cancer foundation
provides information, local support
groups and specialized information to
families and caregivers of children
with cancer.
Center for Grief Recovery
1263 W. Loyola Ave.
Chicago, IL 60626
PHONE: 773-274-4600
WEB: www.griefcounselor.org
Full service counseling center helping
persons who are dealing with
emotionally intense experiences such as
grief, loss, trauma, depression or abuse.
Diagnostic and therapeutic services are
offered with treatment done individually
as well as in group and family settings.
Centering Corporation
7230 Maple Street
Omaha, NE 68134
PHONE: 402-553-1200
WEB: www.centering.org
Provides guidance for families
experiencing grief. Request a copy of
their catalog describing many books,
pamphlets, and videos that focus on
healing with grief.
Comfort Basket
11 Pearl St, Suite B09
Essex Jct, VT 05452
PHONE : 802-876-5010
WEB: www.comfortbaskets.com
Provides Internet links to help you find
information about grief and transition.
Many links focus on grief, children, death
and support.
Compassion Books, Inc.
Compassionate Friends
PO Box 3696
Oak Brook, IL 60522-3696
PHONE: 877-969-0010
FAX : 630-990-0246
WEB: www.compassionatefriends.org
Offers friendship and understanding to
families who are grieving the death of a
child of any age, from any cause. It is a
national network of support groups that
focus on assisting parents who have lost
a child. Parents can also find advice and
support for helping surviving children
cope with the loss of a sibling. Offers
publications for parents and siblings.
There are no dues, and joining is only a
matter of being there.
Dougy Center
for Grieving Children
3909 SE 52nd
Portland, OR 97206
PHONE: 503-775-5683
FAX: 503-777-3097
WEB: www.grievingchild.org
A national model, this Oregon center
offers children and teens a place to
meet and be supported by peers
and families who have experienced
the death of a sister, parent or family
member. Provides support and training
locally, nationally and internationally to
individuals and organizations seeking to
assist children and teens in grief.
Elisabeth Kubler-Ross
Foundation
P.O. Box 6168
Scottsdale, AZ 85261
WEB: www.ekrfoundation.org
Offers seminars, retreats, lectures, and
an assortment of literature based on the
work of Dr. Ross.
Emotions Anonymous
P.O. Box 4245,
St. Paul, MN 55104-0245
PHONE: 651-647-9712
EMAIL: infodf3498fjsd@
emotionsanonymous.org
WEB: www.emotionsanonymous.org
Twelve-step organization composed of
people who come together in weekly
meetings for the purpose of working
toward recovery from emotional
difficulties. EA members are from many
walks of life and are of diverse ages,
economic status, social and educational
backgrounds. The only requirement for
membership is a desire to become well
emotionally. Website also in Spanish,
Japanese and Swedish.
End of Life Support
7036 Hwy 80 South
Burnsville, NC 28714
PHONE: 800-970-4220
FAX: 828-675-9687
WEB: www.compassionbooks.com
The organization has carefully selected
resources related to loss and grief for
people of all ages. Over the past 20 years
they have collected over 400 titles that
have been reviewed by professionals.
A knowledgeable staff is available to
speak to you during office hours of
9 - 5 EDT and books can be ordered by
mail. Subscription to a newsletter is also
available.
Erichad Grief Support
Doerr Consulting
550 W. Plumb Lane, Ste B, #509
Reno, NV 89509
WEB: www.erichad.com
An Internet webring created to connect
the various grief web sites around
the world. All sites listed related to
bereavement, grief, loss and recovery.
Fernside Center
for Grieving Children
4380 Malsbary Rd. Suite 300
Cincinnati, OH 45242
PHONE: 513-745-0111
WEB: www.fernside.org
Addresses emotional needs of children
and their families who have lost a
primary family member or an important
friend. They also provide a Volunteer
Corp., outreach support, speakers on call
and helpful booklets and brochures for
helping children.
Good Grief Program
1 Boston Medical Center Place, Mat 5
Boston, MA 02118
PHONE: 617-414-4005
WEB: www.bmc.org/pediatrics/special/
goodgrief/overview
Provides guidance and assistance to
parents and teachers on all aspects of
childhood grief. Nationally recognized
for its outstanding work in its field, and
it often serves as a resource in crises
situations. Staff members are caring
and dedicated, and they have the most
current data available on how to help
grieving children. Provides, distributes,
and maintains a resource library of films,
books and other material, which may be
borrowed by program participants.
Grief Inc.
4227 S. Meridian, Ste C-363
Puyallup, WA 98373-5963
PHONE: 888-564-6018
WEB: www.griefinc.com
Provides public speaking on topics
of grief and grief support. Each
presentation and audience is unique.
workshops, keynote presentations,
consultations, training, inspirational,
programs, memorial programs.
Grief Net
PO Box 3272 Ann Arbor, MI, 48106-3272
WEB: www.griefnet.org
Internet community of persons dealing
with grief, death, and major loss. They
have nearly 50 email groups and two
web sites. Their integrated approach
to on-line grief support provides
help to people working through loss
and grief issues of many kinds. Their
companion site, KIDSAID, provides a safe
environment for kids and their parents
to find information and ask questions.
Grief Recovery Institute
I have done all that
I was sent into the
world to do, and I
am ready to go.
-C.S. Lewis
P.O. Box 6061-382
Sherman Oaks, CA 91413
PHONE: 818-907-9600
WEB: www.grief-recovery.com
Contains information about sponsored
programs for social service organization;
health care facility; religious or spiritual
group; large corporation or small
business.
Grief Song
Paul Alexander
P.O. Box 858, Amagansett, NY 11930
PHONE: 800-538-4158
WEB: www.griefsong.com
Offers music and creative and nurturing
ways to honor your grief following the
death of a loved one. Website has a
section to share titles and lyrics of songs
that have touched you or strengthened
you and even your original lyrics and
poetry that speaks of the connections to
your loved one.
Grief Talk
WEB: www.grieftalk.com
Online support group where others join
people who are going through similar
grief experiences. Links to support
resources, books, information and
survival guidance.
Growth House
2215-R Market Street, #199
San Francisco, CA, 94114
WEB: www.growthhouse.org
Online community for end of life care.
Resources for life-threatening illness and
end of life care with hopes to improve
the quality of compassionate care for
people who are dying. Links to home
care, pain management, quality of life
issues and grief.
Healing Hearts
for Bereaved Parents
19627 SE 284th SE
Kent, WA 98042-8545
WEB: www.healingheart.net
Offers understanding, suggestions for
coping, support, friendship, and hope
for grieving families.
Hospice Net
401 Bowling Avenue, Suite 51
Nashville, TN 37205
WEB: www.hospicenet.org
Information and links for families facing
life-threatening illness. Sections for
caregivers, bereavement and helping
kids understand and cope. Suggestions
on talking to children about death.
Shiva Foundation
Living With Loss Magazine
Together We Can Heal
Steve Barta Music
PO Box 3272
Ann Arbor, MI, 48106-3272
WEB: www.kidsaid.com
A safe website for kids to share and to
help each other deal with grief about
any of their losses. It’s a place to share
and deal with feelings, to show artwork
and stories, to talk about pets, to meet
with one’s peers. This site is an Internet
community consisting of more than 30
email support groups and two web sites.
Offers links to griefnet, bookstores, library,
memorials, newsletters and resources.
PO Box 101, Eckert, CO 81418
PHONE: 888-604-4673
WEB: www.livingwithloss.com
A support group in print and complete
grief resource center. The stories, articles
and poems in the magazine come
from the bereaved themselves. Regular
departments in the magazine written
by professionals who are in the field of
grief intervention. Their articles address
physical and mental health issues, the
psychology of mourning, ecumenical faith
and cross-cultural perspectives, the grief
of children, and even humor.
PHONE: 805-541-3364
WEB: www.goodgrief.org
Formed to open the dialogue around
issues of grief and loss in such a way that
honors loss in the cycle of life. The Hindu
god Shiva dances the cosmic dance of
creation and destruction teaching us that
each act of destruction calls for an act of
creation. Website topics include: about
grief, grief facts, book, form, services and
other links.
PO Box 1543
Colorado Springs, CO 80901
PHONE: 800-338-4312
FAX: 719-442-0152
WEB: www.stevebartamusic.com/heal.htm
Songs that specifically address the
difficult issues surrounding the loss of
a loved one. The lyrics of these songs
communicate and empathize with a wide
range of emotions.
End of Life Support
KidSaid
Mental Health Network
570 Metro Place
Dublin, OH 43017
WEB: www.mentalhelp.net
Extensive guide to mental health,
psychology, and psychiatry online
resources, currently listing over 7,000
individual resources for depression,
suicide, eating and sleeping problems,
anxiety, and more.
M.I.S.S. Foundation
P.O. Box 5333
Peoria, AZ 85385
PHONE: 888-455-6477
WEB: www.missfoundation.org
Provides emergency support to families
in crisis after the death of their baby or
young child from any cause. They help
families cope with the resultant feelings of
overwhelming grief and loss.
National Self-Help Clearinghouse
1211 Chestnut Street, Suite 1207
PHONE: 800-553-4539
FAX: 215-636-6312
WEB: www.mhselfhelp.org
Helps people locate self-help groups in
their region. Offers educational materials
and newsletters. Online resources and
information are also available through
their website.
Funeral & Memorial Services
Funerals and memorial services are complex events that must balance many
factors, including religious requirements, emotional needs, and financial
resources. Most states have a licensing board that regulates the funeral
industry. If you want additional information about how to make funeral
arrangements and available options, you may want to talk with your hospital
social worker or chaplin.
ACOR
WEB: www.acor.org/ped-onc/
The “Time to go” link on this web page
contains information and links for
planning a child’s funeral. Information
is from parents who have been
through the experience and want
to give parents suggestions on how
to deal with some practical matters,
freeing them to enjoy fully their last
days on earth with their child.
A Guide to Arranging a Funeral
WEB: www.health.state.ny.us/nysdoh/
consumer/patient/funeral.htm
Provides information on funeral
and memorial planning, terms and
vocabulary used by funeral homes,
commonly asked questions regarding
arrangements, and important
guidelines to help make decisions and
prevent overcharging.
Cremation Association
of North America
401 North Michigan Ave.
Chicago, IL 60611
PHONE: 312-245-1077
FAX: 312-321-4098
WEB: www.cremationassociation.org
An association of crematories,
cemeteries, and funeral homes that
offer cremation and encourage the
concept of memorialization.
Eternal Reefs
P.O. BOX 2473
Decatur, GA. 30031
PHONE: 888-423-7333
WEB: www.eternalreefs.com
Offers families a way to cope and deal
with the death of a family member
by turning cremated remains into an
artificial coral reef that can be placed
into the ocean.
Funeral Consumers’ Alliance
33 Patchen Road
South Burlington, VT 05403
PHONE: 800-765-0107
FAX: 802-482-5246
WEB: www.funerals.org
Advises families of their rights,
educates them regarding choices,
helps with lower priced options,
advises on rights to care for one’s own
death.
Funeral Directory
WEB: www.thefuneraldirectory.com
A directory of funeral services.
Funeralplan.com
WEB: www.funeralplan.com
Information about funeral planning
and the funeral industry. The funeral
home locator, a key element of
funeralplan.com, is designed to help
consumers locate family-owned
funeral homes in their area.
Funerals:
A Consumer Guide
Consumer Response Center
600 Pennsylvania Avenue, NW
WEB: www.ftc.gov/bcp/conline/
edcams/funerals/coninfo.htm
Information which enables consumers
to obtain information about funeral
arrangements. Discloses the lawful
necessities for holding a funeral and
prices. Offers information to help you
obtain honest information and prices
so that you will not be overcharged.
To receive a free brochure “Facts for
Consumers: Funerals A Consumer
Guide”. Send a self addressed, stamped
envelope to the address above.
1219 SE Ivon Street, Suite 200
Portland, OR 97202
PHONE: 800-721-8166
FAX: 503-736-9835
WEB: www.funeralnet.com
Offers the most extensive U.S. and
Canadian funeral home directory on the
Internet. The directory can lead you to
funeral home Websites in your area. Also
offers helpful information regarding
funerals, cremations, cemeteries and
other related subjects.
Funeral Service Foundation
13625 Bishop’s Drive
Brookfield, WI 53005-6607
PHONE: 877-402-5900
FAX: 262-789-6977
WEB: www.funeralservicefoundation.org
Provides resources for: the improvement
of children’s lives; career and professional
development; and public awareness and
education support of funeral service and
allied professions.
Growth House
Funeral and Memorial Planning
WEB: www.growthhouse.org/funeral.html
Listing of organizations that offer
information and assistance related to
funeral and memorial planning. Links to
additional resources provided.
LifeGem
836 Arlington Heights Road #311
Elk Grove Village, IL 60007
PHONE: 866-543-3436
WEB: www.lifegem.com/
A LifeGem is a certified, high quality
diamond created from the carbon of your
loved one as a memorial to their unique
and wonderful life. During cremation, the
18 percent of the body that is carbon gets
turned into gas. The carbon is collected
before the transformation takes places
and is processed into graphite and into a
“rough diamond.”
National Funeral Directors’
Association
13625 Bishops Drive
Brookfield, WI 53005
PHONE: 800-228-6332
FAX: 262-789-6977
WEB: www.nfda.org
Offers information on funerals and
memorial planning. Provides numerous
links to resources associated with death.
Promotes quality service.
M.I.S.S. Foundation
P.O. Box 5333
Peoria, AZ 85385
PHONE: 888-455-6477
WEB: www.misschildren.org/family/
funeral.html
Provides information and options for
funeral and memorial services, including a
Funeral/Memorial Planning Worksheet.
End of Life Support
FuneralNet
Our Final Journey
WEB: http://endoflifecare.tripod.com/
Caregiving/id92.html
A directory of links, including, forms and
information to help you in planning for
your family needs whether you have a
chronic medical condition or not. Section
18 contains useful funeral planning
information.
Quilts of Love
WEB: www.quiltsoflove.com
Graphic quilts are created for a children
with a personal touch and uploaded to
the internet so that family and friend may
visit it anytime. All the work is free by
volunteers. E-mail is the preferred way to
contact the organization.
Memorials Online
P.O. Box 28101
St. John’s, NL Canada A1B 4J8
WEB: www.memorialsonline.com
Internet memorial obituary archive search
resource dedicated to providing access
to a broad range of funeral, bereavement
and sympathy related services through
partnering with experts in the funeral
services industry. The organization helps
families create meaningful website
Memorial Tributes in an open, accessible
environment for friends and family
around the world to celebrate the lives of
loved ones.
Get Involved. Be Inspired.
Please support us. At CCA, every day brings new requests from families in need. CCA
receives no federal or state funds. Every dollar received by CCA comes from individual
donors, corporate support and foundation grants. For each dollar donated, 76¢ goes
directly to our programs. Please help us reach even more families by contributing today.
Online:
www.JoyRx.org
By Mail:
433 NW 4th Avenue, Suite 100
Portland, OR 97209
You can print a donation
form online at www.JoyRx.org
By Phone:
Call (503) 244-3141
Monday - Friday, 8:00 am - 5:00 pm PST
Go to
www.JoyRx.org
to find out
more about
how you can
help!

Kid`s Cancer Pages

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