Solid Organ Resource Guide v5

Solid Organ Resource Guide – V6.0
INTERLINK’s medical team compiled the table below of transplant related agencies, vendors and
support programs that can be contacted by internet or telephone. Some of the agencies and programs
provide very specific information which may be useful during the transplant process, and it is our
hope this list will lead you to the precise information you need. This list is not necessarily complete
and INTERLINK does not endorse any of the organizations and is providing this information in a
non-biased manner. You should evaluate sources of information carefully before making important
decisions. As always, the most patient specific source of information about your potential transplant
will be provided to you from the transplant center(s) your candidate or insured is considering.
The single best publicly available resource for learning about solid organ transplantation has been
prepared by the United Network for Organ Sharing (UNOS) and can be found at
www.transplantliving.org. We strongly recommend that you refer to this resource and to the website
of the transplant center or centers that your candidate/insured is considering. The transplant center
websites frequently contain the most up-to-date list of housing options and other current information
that will be of importance to you.
Web Links & Phone Numbers
General Information
American Center for
Transplant Resources
American Organ
Transplant Association
American Society for
Histocompatibility &
Immunogenetics
American Society of
Transplantation
American Society of
Transplant Surgeons
Coalition on Donation
Children’s Organ
Transplant Association
(COTA)
International Transplant
Nurses Society
National Associations of
Hospital Hospitality
Houses
Medicare
Medicare Hotline
National Insurance
Consumer Hotline
(919) 932-7845
www.aotaonline.org
www.ashi-hla.org/
www.a-s-t.org
www.asts.org
www.donatelife.net
www.cota.org/
www.itns.org
www.nahhh.org
www.cms.gov
(800) 638-6833
(800) 942-4242
©2013 INTERLINK® Health Services, Inc. • 800-599-9119 • www.interlinkhealth.com
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National Organization of
Social Security Claimants'
Representatives
National Organization for
Rare Disorders
North American
Transplant Coordinators
Organization (NATCO)
The Organ Procurement
and Transplant Network
(OPTN)
Transplant Living
Transplant Recipients
International Organization,
Incorporated (TRIO)
TRICARE
United Network for Organ
Sharing (UNOS)
Heart and Lung
Transplant
American Heart
Association
American Thoracic Society
International Society for
Heart and Lung
Transplantation (ISHLT)
Second Wind Lung
Transplant Association,
Inc.
Kidney Transplant
American Kidney Fund
American Association of
Kidney Patients
American Society of
Nephrology
American Urological
Association
Forum of ESRD Networks
National Kidney
Foundation
North American Society
for Dialysis and
Transplantation
www.nosscr.org or (888) 431-2804
www.rarediseases.org
www.natco1.org
www.optn.org
www.transplantliving.org
www.trioweb.org
www.tricare.osd.mil or (303) 676-3526
www.unos.org
www.americanheart.org/presenter.jhtml?identifier=4588
www.thoracic.org
www.ishlt.org
www.2ndwind.org
www.akfinc.org
www.aakp.org/transplant-information/
www.asn-online.org
www.auanet.org
www.esrdnetworks.org
www.kidney.org/transplantation/
www.nasdat.org
©2013 INTERLINK® Health Services, Inc. • 800-599-9119 • www.interlinkhealth.com
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Liver Transplant
American Association for
the Study of Liver
Diseases
American Liver
Foundation
Center for Liver Diseases
Children's Liver
Association for Support
Services (CLASS)
Hepatitis Foundation
International
www.aasld.org
www.liverfoundation.org/education
1-800-465-4837
(305) 547-5787
www.classkids.org/
www.hepfi.org
Pancreas, Kidney/Pancreas and Islet Cell Transplant
American Diabetes Association
www.diabetes.org
Clinical Islet Transplantation Consortium
www.citisletstudy.org
Juvenile Diabetes Foundation International (212) 785-9500 or (800) 533-2873
Financial Assistance/Information
National Foundation for Transplants
National Transplant Assistance Fund
Patient Advocate Foundation
Drug Assistance
Abbott Patient Assistance Program
(Gengraf)
Fujisawa Patient Assistance Program
(Prograf)
Needy Meds
Novartis Patient Assistance Program
(Cyclosporine)
Pharmaceutical Research and
Manufacturers of America
Roche Patient Assistance Program
(Cellcept)
The Medicine Program
Transportation
Air Care Alliance
Air Charity Network
Corporate Angel Network
National Patient Travel Center
www.transplants.org
1-800-489-3863
www.transplantfund.org
1-800-642-8399
www.patientadvocate.org
(800) 633-9110
(800) 477-6472
www.needymeds.com
(888) 455-6655
www.phrma.org
(800) 772-5790
www.themedicineprogram.com
www.aircareall.org
www.aircharitynetwork.org
www.corpangelnetwork.org
www.patienttravel.org
©2013 INTERLINK® Health Services, Inc. • 800-599-9119 • www.interlinkhealth.com
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Support Organizations
Family Caregivers Alliance
Family Voices
Friends Health Connection
National Alliance for Caregiving
National Family Caregivers Association
National Organization for Empowering
Caregivers
National Respite Locator Service
Rosalyn Carter Institute
Starlight Children’s Foundation
Well Spouse Foundation
www.caregiver.org
www.familyvoices.org
www.friendshealthconnection.org
www.caregiving.org
www.nfcacares.org
www.nofec.org
www.respitelocator.org
www.rci.gsw.edu
www.starlight.org
www.wellspouse.org
©2013 INTERLINK® Health Services, Inc. • 800-599-9119 • www.interlinkhealth.com
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