Patient /Doctor Meeting - Pemphigus Pemphigoid Foundation

Transcription

2010 ANNUAL MEETING
PHILADELPHIA  APR 30 - MAY 2
13th Annual
Patient / Doctor Meeting
Sheraton Society Hill Hotel
Philadelphia PA
Philadelphia PA • April 30-May 2, 2010 | iii
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Session Descriptions SATURDAY
An Introduction to Pemphigus & Pemphigoid . . . . . . . . . . . . . . . . . . . . . . 3
BREAKOUT SESSION: HMP Track: What Peer Health Coaches Do and Why *. . . . . . . . . . 3
BREAKOUT SESSION: NDRI. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
BREAKOUT SESSION: IVIG Therapy for Pemphigus and Pemphigoid. . . . . . . . . . . . . 3
Development of Novel Treatment Strategies for Pemphigus. . . . . . . . . . . . . . . . 4
KEYNOTE PRESENTATION: Orphan Drugs and Patient Advocacy: Is There a Role for You?. . . . 4
Why Do Patients Have Flares? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
BREAKOUT SESSION: HMP Track: Pemphigus and Pemphigoid Below the Belt *. . . . . . . 4
BREAKOUT SESSION: Wound Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
BREAKOUT SESSION: Oral and Dental Impact and Care in Pemphigus and Pemphigoid . . . . 5
Laughter is the Best Medicine. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Q&A with the IPPF Board of Directors. . . . . . . . . . . . . . . . . . . . . . . . . . 5
Q&A with the Experts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Table of Contents
2010 Annual Meeting Agenda
SUNDAY
Medications used to treat P/P. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Treatment Advances in Autoimmune Bullous Disorders. . . . . . . . . . . . . . . . . . 6
BREAKOUT SESSION: HMP Track: Coaching Strategies and Moving Forward *# . . . . . . . . 6
BREAKOUT SESSION: Coping with Chronic Illness and Mood Disorders. . . . . . . . . . . . 6
BREAKOUT SESSION: Q&A with available doctors . . . . . . . . . . . . . . . . . . . . . 6
Speaker Biographies
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Slide Presentations
An Introduction to Pemphigus and Pemphigoid (Dr. Anhalt) . . . . . . . . . . . . . . . . . 11
BREAKOUT: IVIG for Pemphigus and Pemphigoid (Michelle Greer, RN). . . . . . . . . . . . . 23
Development of Novel Treatment Strategies for Pemphigus (Drs. Stanley/Payne) . . . . . . . . 27
Why Do Patients Have Flares? (Dr. Sinha) . . . . . . . . . . . . . . . . . . . . . . . . . . 35
BREAKOUT: Pemphigus and Pemphigoid: Below the Belt (Dr. Ahmed) - available at presention. xx
BREAKOUT: Wound Care (Danielle Malchano, RN). . . . . . . . . . . . . . . . . . . . . . 45
BREAKOUT: Oral and Dental Impact and Care in Pemphigus and Pemphigoid (Dr. Sirois) . . . . . 49
Medications Used to Treat P/P (Dr. Fett). . . . . . . . . . . . . . . . . . . . . . . . . . 59
Treatment Advances in Autoimmune Bullous Disorders (Dr. Werth). . . . . . . . . . . . . . 71
Additional Information
Note Taking Pages. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82
Annual Meeting Evaluation Form. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
Annual Meeting Room Locations in the Hotel . . . . . . . . . . . . . . . . . . . . . . . . 87
Things to Do Near the Hotel with Map . . . . . . . . . . . . . . . . . . . . . . . . . . . 88
Thank You to our Sponsors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91
* This session is part of a threesession HMP Track offered at the
IPPF Annual Meeting. If you are
interested in becoming a PHC for
the IPPF, you must attend all three
tracks. You may drop out after any
session, but please do not drop “in”.
Thank you.
# While this session is part of the
HMP Track, we understand the
importance of it to many individuals. Threfore, this session is OPEN
to anyone interested in learning
more about or having questions
regarding the topic.
International Pemphigus & Pemphiogoid Foundation
Welcome to Philadelphia!
Dear Meeting Attendees:
Welcome to the 2010 IPPF Patient/Doctor Meeting, (The 13th annual!) It is good to be together again to
strengthen our “uncommon bond”. We hope you find this meeting to be filled with great information and warm
connections that help each of you -- and future patients -- move through your pemphigus/pemphigoid experience with the most knowledge, support and resources available.
Although patient meetings are mostly focused on getting you the best information to help you manage your
illness, this year we want to add another layer: exploring how patients and patient support organizations work to
get better treatments recognized and used, and new drugs developed. Some things to be on the lookout for:
Influencing Progress: During this year’s meeting we are launching the IPPF P/P Patient Registry. Registries
are the foundational, necessary element to both discovering which treatment steps are suggested in which situations, as well as inspiring the research that leads to new discovery in mechanisms of disease and novel treatment opportunities. Patients are the ONLY ones that can help us here. We need vital information from 1000
patients (information only, no names) to effectively influence opinions and policy on the best treatment options
and opportunities / needs for research. After you return home you will receive your personal link to the registry
questions. The survey is online, taken in the comfort of your home, so please, please fill it out. Like the US
Census, if you don’t give your information we cannot demonstrate need that drives resource allocation and support leading to improved policy and outcomes.
Driving Change: Jay Matthews is our Keynote speaker this year. Jay will speak to us on how patient data and
patient participation can improve the chances of orphan drug development. The FDA has many paths to encouraging development for our specialty drugs, learn more how you can contribute to making a difference.
Supporting Others: We are having a special set of Breakout Sessions for those interested in serving others as a
Peer Health Coach. If you want to give back to others with your knowledge and experience, and are willing to
explore further training and commitment to the IPPF through the Peer Health Coach Program, you are invited
join these breakout sessions. Explore what’s involved and then you may decide if this is a good fit for you.
Celebrating Community: While there are some new things going on this year, everything else is what you always expect: high-quality, expert information; a chance to speak with leading doctors in person; fellowship with
friends and support; food, laughs, reunion --sharing our common hope through our uncommon bond.
On behalf of the IPPF Board of Directors, Medical Advisory Board, staff, and patients around the world -Welcome to Philadelphia!
Molly Stuart, JD
CEO
David A. Sirois, DMD, PhD
President
Philadelphia PA • April 30-May 2, 2010 |
FRIDAY, APRIL 30, 2010
5:30-9:00 p.m. Pre-Registration
6:00-7:00 p.m. Newcomer Orientation (sponsored by AxelaCare)
SATURDAY, MAY 1, 2010
7:30 a.m. Registration and Continental Breakfast
8:00-9:00 An Introduction to Pemphigus/Pemphigoid (Grant Anhalt, MD) followed by Q&A
9:00-9:30 Welcome & Meeting/Registry Launch (Dave Sirois, Molly Stuart, Will Zrnchik)
9:30-9:45 BREAK and move to BREAKOUTS
9:45-10:30 BREAKOUT SESSIONS
♦♦ HMP TRACK: What Peer Health Coaches Do and Why? (Marc Yale) *
♦♦ *** (NDRI) (Main Hall??)
♦♦ IVIG Therapy for Pemphigus and Pemphigoid (Michelle Greer, RN, BSN)
10:30-10:45 BREAK and move to MAIN HALL
10:45-11:45 Plenary Session: Basic Science Research (Drs Payne & Stanley)
11:45 - 1:15 p.m. IPPF Annual Awards Luncheon - Keynote address by Jay Matthews, MBA
1:15 - 2:15 Plenary Session: Why do Patients Have Flares? (Ani Sinha, MD) followed by Q&A
2:15 - 2:30 BREAK and move to BREAKOUTS
2:30 - 3:15 BREAKOUT SESSIONS
♦♦ HMP TRACK: Pemphigus & Pemphigoid Below the Belt (Razzaque Ahmed, MD) *# Open to All
♦♦ Wound Care (Danielle Malchano, RN)
♦♦ Oral and Dental Impact and Care in Pemphigus and Pemphigoid (David Sirois, PhD, DMD)
3:15 - 3:30 BREAK and Move to MAIN HALL
3:30 - 4:00: Laughter is the Best Medicine (Barbara Hee)
4:00 - 4:30: TBD
4:30 - 5:00: Q&A Talk with your Board of Directors (Chair, Dave Sirois)
5:00 - 5:30: Q&A Experts Open Panel (Drs. Anhalt, Werth, Sinha, Sirois, Payne)
5:30: Sessions end for the day • Dinner on own • IPPF Mixer & Movie (until 9 p.m.) • BOD Meeting Offsite
SUNDAY, MAY 2, 2010
9:00-10:00 Plenary Session: Medications Used to Treat P/P: Mechanisms of Action, Supporting Evidence, and
Common Side Effects (Nicole Fett, MD)
10:00-11:00 Plenary Session: Treatment Advances (Victoria Werth, MD) followed by Q&A
11:00-12:00 p.m. BREAKOUT SESSIONS
♦♦ HMP TRACK (Marc Yale) *
♦♦ Group Session: Coping with Chronic Illness and Mood Disorders (Terry Wolinsky-McDonald, PhD)
♦♦
Q&A with available doctors (panel discussion)
12:00 p.m. ANNUAL MEETING CONCLUDES. THANK YOU FOR ATTENDING!
2010 Annual Meeting Agenda
7:00-9:00 p.m. Welcome Reception: Refreshments and fellowship
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| IPPF 13th Annual Patient/Doctor Meeting
This session is targeted towards newly diagnosed patients, but everyone is welcome. Join Dr. Anhalt for a fascinating presentation on what pemphigus and pemphigoid actually are and how they affect the body. The presentation answers many questions patients have, such as “Why me?” and “Will my children have it, too?” Regardless
if this is your first Annual Meeting - or your tenth - Dr. Anhalt explains the in’s and out’s of these diseases to
help patients and their families obtain a better understanding of the diseases at the cellular level and in day to
day life.
Presenter: Grant Anhalt, MD
Day/Time: Saturday, 8:00 a.m.- 9:00 a.m.
BREAKOUT SESSION: HMP Track: What Peer Health Coaches Do and Why
* The HMP Tracks are for people interested in finding out about becoming a PHC. To be considered by the IPPF as a
future PHC, you MUST attend all three PHC tracks during the Annual Meeting. You may drop out after any session,
but please do not drop “in”.
TRACK 1 OF 3
IPPF Certified Peer Health Coach Marc Yale brings his sense of humor and passion for helping others to the
first-ever Health Management Program (HMP) session for people wanting to become a Certified Peer Health
Coach (PHC). The IPPF has developed the ultimate support mechanism for Pemphigus/Pemphigoid patients
by providing Certified Peer Health Coaches. During this PHC Track you, will have an opportunity to learn how
you can make an impact by becoming a Certified Peer Health Coach.
Presenter: Marc Yale, IPPF PHC
Day/Time: Saturday, 9:45 a.m. - 10:30 a.m.
BREAKOUT SESSION: NDRI
Information on the forthcoming IPPF blood and tissue bank. The National Disease Research Interchange serves
scientists with customized biomaterials for use in studies to understand human disease. NDRI receives funding from the National Institutes of Health (NIH), including funding from the National Center for Research
Resources (NCRR), the National Eye Institute (NEI), the National Institute for Diabetes and Digestive and
Kidney Diseases (NIDDK), the National Institute of Allergy and Infectious Diseases (NIAID), the National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the National Heart, Lung and Blood
Institute (NHLBI), and the Office of Rare Diseases (ORD).
Presenter: T.B.D.
BREAKOUT SESSION: IVIG Therapy for Pemphigus and Pemphigoid
Learn more about this alternative to immunosuppressive drugs and steroids from a leading provider in infusion services, Crescent Healthcare. Registered Nurse Michelle Greer talks about intravenous immune globulin
(IVIG), what it is, how it is administered, possible side effects, and how current literature supports IVIG therapy
given over a few years can provide lasting remission.
Presenter: Michelle Greer, RN
Day/Time: Saturday, 9:45 a.m.- 10:30 a.m.
Session Descriptions
An Introduction to Pemphigus/Pemphigoid
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Development of Novel Treatment Strategies for Pemphigus
Currently, all therapies for pemphigus focus on general immune suppression, which can cause infection, secondary cancers, and other undesirable side effects. What do we need to know to develop more specific and potentially safer treatments? We will give an overview of some of the basic science research on new treatment strategies for pemphigus.
Presenters: John Stanley, MD, and Aimee Payne, MD
KEYNOTE PRESENTATION: Orphan Drugs and Patient Advocacy; Is There a Role for You?
Enjoy an informative talk over lunch with Jay Matthews. Jay will provide a brief overview of the Orphan Drug
Act, followed by a discussion on the impact of partnerships between patient advocacy groups and pharmaceutical companies.
Presenter: Jay Matthews, MBA
Day/Time: Saturday, during the Awards Ceremony Luncheon, 11:45 a.m. - 1:15 p.m.
Why Do Patients Have Flares?
Long-time IPPF Annual Meeting speaker, Dr. Ani Sinha, reports on the results of a Michigan State University
pemphigus patient survey and outlines the new study his team has planned. He also discusses how and why
patients cycle through periods of activity (flares) and remissions.
Presenter: Animesh Sinha, MD
Day/Time: Saturday, 1:15 p.m. - 2:15 p.m.
BREAKOUT SESSION: HMP Track: Pemphigus and Pemphigoid Below the Belt
# This session is open to anyone interested in attending.
TRACK 2 OF 3
In this section the principal focus will be on practical methods, ways and means to treat pemphigus and pemphigoid affecting the penis, vagina, and anal canal. These techniques are intended to help with activities of daily
living, improve quality of life, and expedite healing. In this session all the emphasis is on what patients can and
should do to make their life easier.
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Presenter: Razzaque Ahmed, MD
BREAKOUT SESSION: Wound Care
Danielle Malchano discusses proper wound care. NationalRehab is a regional provider of orthotics and prosthetics and a national leader in the provision of specialty wound care dressings, urological and ostomy supplies.
Presenter: Danielle Malchano, RN
BREAKOUT SESSION: Oral and Dental Impact and Care in Pemphigus and Pemphigoid
Dr. Dave Sirois discusses pemphigus and pemphigoid in the mouth and how it affects the gums and teeth.
Learn how to take better care of your oral wounds, what products to use (and to avoid), and how improving your
quality of life starts with better oral care.
Presenter: Dave Sirois, PhD, DMD
Laughter is the Best Medicine
Join Barbara Hee, Certified Laughter Leader, for a fun and energetic presentation on the ways positive emotions and attitudes contribute to healing and add to your quality of life. Practice feel-good techniques to help
you reduce stress. Learn practical and easy ways to improve your outlook and enhance your well being. Ancient
wisdom and modern science agree: laughter is serious medicine. Bring your funny bone to this session!
Presenter: Barbara Hee
Day/Time: Saturday, 3:30 p.m. - 4: 00 p.m.
Q&A with the IPPF Board of Directors
Think of this as the IPPF Town Hall Meeting. What is the IPPF doing to help patients? What are the goals
for 2010? Where is the IPPF heading in 2011 and beyond? Members of the IPPF Board of Directors will be
on hand for the first-ever BOD Q&A session to clarify the path the IPPF is taking on what the Foundation is
doing to advance awareness, research, and education among medical professionals, as well as provide support and
assistance to patients.
Chair: Dave Sirois, President, IPPF BOD
Q&A with the Experts
You’ve got questions? They have the answers. Leading pemphigus and pemphigoid dermatologists, dentists, and
scientists take the stage and answer questions from the audience. This is a perfect opportunity to ask that one
tough question you have that nobody seems to have the answer for, yet you NEED the answer to. Due to time
limitations, we advise attendees to write their questions down ahead of time or during the Q&A in the event
they do not have a chance to ask them. Questions will be collected and the panel will answer them with time
permitting. If your question was not answered at the meeting, look for an answer in the Summer 2010 issue of
the IPPF Quarterly.
Medications used to treat P/P
Join Dr. Nicole Fett for an overview of autoimmune blistering disorders, a correctly functioning immune system,
autoimmunity, and the medications used to treat autoimmune diseases. Learn about dosing, side effects and
monitoring the patient’s response to treatment. Medications discussed include: systemic steroids, prednisone,
tetracycline antibiotics, dapsone, azathioprine, mycophenolate mofetil, methotrexate, TNF-a inhibitors, IVIG,
and rituximab.
Presenter: Nicole Fett, MD
Day/Time: Sunday, 9:00 a.m. - 10:00 a.m.
Panel: Drs. Grant Anhalt, Victoria Werth, Ani Sinha, Dave Sirois, and Aimee Payne
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Treatment Advances and Q&A
There are new developments in the treatment of pemphigus and pemphigoid that will be discussed. Development of validated outcome measures for pemphigus and pemphigoid that will facilitate performance of clinical
trials and allow comparison of results in different trials will be discussed. There have been two phase 1 trials related to pemphigus that will be discussed. In addition, the role of a TNF inhibitor in pemphigus is being evaluated in a multicenter controlled trial in the U.S. Early studies are evaluating agents that deplete B cells, and thus
the antibodies that they produce. Some new approaches to pemphigus and pemphigoid will be discussed.
Presenter: Victoria Werth, MD
Day/Time: Sunday, 10:00 a.m. - 11:00 a.m.
BREAKOUT SESSION: HMP Track: Coaching Strategies and Moving Forward
TRACK 3 OF 3
During this one hour session you will learn how the PHC program matches Peer Health Coaches and Patients
- based on criteria important to the patient, and learn methods that help build trusting peer relationships where
information, support and inspiration for better health are facilitated. You will also learn about the advanced
training provided to IPPF Certified Peer Health Coaches to help patients find better outcomes, faster.
Presenter: Marc Yale, IPPF PHC
Day/Time: Sunday, 11:00 a.m. - 12:00 p.m.
BREAKOUT SESSION: Coping with Chronic Illness and Mood Disorders
Sometimes it is best to talk about things going on. For pemphigus and pemphigoid patients, it is often difficult
to find a sympathetic group of people who actually know what a person is going through. Well, this session is
led by IPPF Board of Directors member and licensed clinical psychologist Dr. Terry Wolinsky-McDonald. Join
Terry as she shares her experiences, tips, and advice as both a PV patient and psychologist to help patients cope
and manage the emotional aspects of P/P.
Presenter: Terry Wolinsky-McDonald, PhD
BREAKOUT SESSION: Q&A with the Experts
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End the Annual Meeting with a chance to have any remaining questions you have answered by a panel of pemphigus and pemphigoid experts. Again, please write down any questions you may have so in the event the panel
cannot answer them during this session, the IPPF can get them answered for you.
Panel: Comprised of available speakers
Director, Center for Blistering Diseases, Blistering Disease Clinic (Boston)
Dr. A Razzaque Ahmed served on the Faculty of Medicine at UCLA before
moving to Harvard Medical School in Boston. Here he received a Doctorate
of Medical Sciences Degree and pursued his laboratory research and clinical practice in Boston. His landmark contribution to the understanding of
blistering diseases is demonstrating an association between the development
of the disease and the presence of specific MHC Class II genes. He has been
a pioneer and leader in demonstrating the benefits of using intravenous immunoglobulin (IVIg) in treating these disorders. His work on the combination
therapy using IVIg with Rituximab has been accepted globally as the most
advanced and productive treatment for patients with recalcitrant disease.
Grant Anhalt, M.D.
Professor, Depts. of Dermatology and Pathology, Johns Hopkins University
Dr. Grant Anhalt is a founding (and current) member of the IPPF Medical Advisory Board and Director, Dermatologic Immunology Laboratory. He and his
team devote their efforts to clinical care, research, education, and treatment
of individuals affected by pemphigus. His current studies focus on the identification of additional adhesion molecules recognized by human autoantibodies
but not yet cloned, the mechanisms by which antibody - protein interactions
down-regulate their function in vivo, and exploring mechanisms operative in
the induction of autoimmunity by lymphoreticular malignancies in paraneoplastic pemphigus.
Brian Cleary
Director of Sales and Development, AxelaCare Health Solutions
Brian Cleary is a native of Philadelphia and expert in both home infusion
products and insurance company negotiations. Has been working with
patients who need IVIG and rituximab for the past ten years. Brian has helped
several IPPF members when nobody else could by cutting through the insurance company’s “red tape” to get the specialized medications and treatments
the patient needed. Brian is honored to be working with the IPPF in helping
patients with their insurance questions and fighting the good fight with the
insurance companies.
Nicole Fett, M.D.
Assistant Professor of Dermatology, University of Pennsylvania
Dr. Nicole Fett graduated medical school from the University of Wisconsin/
Madison followed by her internship, residency, and fellowship at UW Hospital
and Clinics. She works in dermatology and internal medicine at the University
of Pennsylvania’s Dermatology Department, specializing in dermatopathology with a special interest in autoimmune diseases. Dr. Fett joined the University of Pennsylvania in 2009.
Speaker Biographies
A. Razzaque Ahmed, M.D., D.Sc.
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Michelle Greer, R.N., M.B.A.
Vice President of Business Development, Crescent Healthcare
Michelle Greer is an RN and is the Vice President of Business Development for
Crescent Healthcare, a national provider of IVIG in the home setting. Michelle
has worked with patients requiring IVIG for autoimmune blistering diseases
for over eight years.
Barbara Hee
Certified Laugh Leader
Barbara Hee was so sick from the Pemphigus which affected her mouth, nose
and throat that she had to give up her successful but stressful career as a sales
manager. She eventually reinvented herself and is now a speaker and laughter
leader. Barbara has taken her laughter programs to many people, for example,
seniors, caregivers, Girl Scouts, cancer survivors, nurses, teachers and Alzheimer’s patients. Barbara believes that cultivating a positive attitude and wearing
a smile contribute greatly to healing and having a better quality of life. As
thankful as she is for Prednisone and Immuran, she is happy to be off these
life-saving meds since April of last year, enjoying remission. Yes!
Danielle Malchano, R.N., B.S.N.
National Account Manager, National Rehab Wound Care Division
Danielle has a Nursing diploma from St. Francis School of Nursing and a
Bachelor of Science in Nursing degree from LaRoche College. She worked in
both the intensive care and emergency medicine for 12 years. She has 5 years
experience with Highmark BCBS were she worked in Quality Assurance and
Corporate Compliance were her department spear headed the NCQA accreditation to a status of “Excellence”. She has been with NR for 9 years in a sales
position marketing the compression management and wound care programs.
One of her current responsibilities include coordinating the activities for some
of the specialty skin conditions and advocating on the patients behalf to
obtain wound care supplies.
Speaker Biographies
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Jay Matthews, M.B.A.
Shared Service Center Mngr., Clinical Research Operations, Merck & Co, Inc.
Jay Matthews is a Registered Respiratory Therapist with extensive experience
in clinical research. Jay worked for 7 years at the Children’s Hospital of Philadelphia where he was Director of The Clinical Trials Office and Research Projects. Jay has a BS in Health and Business, and an MBA in Health and Medical
Services Administration from Widener University. Jay is currently a PhD. candidate in Health Policy at the University of the Sciences-Philadelphia where
he is pursuing a dissertation focusing on orphan drugs and the interaction
of patient advocacy groups. Jay currently manages multiple clinical research
projects in the United States and Canada for Merck Pharmaceuticals.
Aimee S. Payne, M.D., Ph.D.
Assistant Professor, Department of Dermatology
Dr. Aimee Payne is an Assistant Professor in the Department of Dermatology
at the University of Pennsylvania. Her clinical practice specializes in the care
of autoimmune blistering disease patients. Her research laboratory focuses
on the cloning and characterization of pemphigus antibodies: how they are
formed and how they cause disease. She has received the American Academy
of Dermatology Young Investigator Award and grants from the American Skin
Association, Dermatology Foundation, and the National Institutes of Health
for her work on mechanisms of disease and novel treatments for pemphigus.
Janet Segall, B.S., C.H.C.
Founder, IPPF
Janet Segall is a PV patient and founder of the IPPF. Working from a corner
in her bedroom in the early 1990s, Janet started the Foundation as a group
of patients searching for answers. Today, the IPPF is an internationally recognized, award-winning community of patients, caregivers, and medical professionals focused on advocacy, education, and finding a cure. She has dedicated
her life to helping others with P/P. Janet is in the early stages of her career as
a hypnotherapist and autoimmune disease counselor. Janet will be presenting the IPPF Founder’s Award during the Awards Luncheon on Saturday to Dr.
Jean-Claude Bystryn, a dear friend and driving force behind the IPPF.
Animesh A. Sinha, M.D., Ph.D.
Chief Dermatology and Cutaneous Sciences, Michigan State University
Dr. Ani Sinha received his M.D. and Ph.D. in Medical Sciences - Immunology
from the University of Alberta (Canada). He is a member of the IPPF Medical
Advisory Board. Dr. Sinha’s subspecialty training in dermatology was completed at Yale University/Yale-New Haven Hospital. Dr. Sinha is a board-certified dermatologist whose professional goals aim to bridge the bench to the
bedside. He continues to be sought after as an invited speaker worldwide on
a broad range of clinical and research topics.
Associate Professor of Oral Medicine and Neurology, New York University
Dr. David Sirois is the President of the IPPF Board of Directors, member of
the IPPF Medical Advisory Board, and recipient of the IPPF Founder’s Award
(2009). Dr. Sirois is a leading authority in Oral Medicine, oral mucosal disease,
orofacial pain and dental health care for patients with complex medical problems, Dr. Sirois has lectured and published extensively, and been continuously
funded in research through the National Institutes of Health and through
private and commercial organizations.
Speaker Biographies
David A. Sirois, D.M.D., Ph.D.
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10 | IPPF 13th Annual Patient/Doctor Meeting
John R. Stanley, M.D.
Professor & Chairman, Dept. of Dermatology, University of Pennsylvania
Dr. John Stanley is the Professor and Chairman of the University of Pennsylvania’s Department of Dermatology. Dr. Stanley received his medical degree
from Harvard Medical School and did his fellowship at the National Institutes
of Health. He is a member of the American Academy of Dermatology, the Society for Investigative Dermatology, and several other organizations supporting the dermatology and research fields. Dr. Stanley’s work has earned him
recognition from Best Doctors in America (2003-2004, 2005-2006, 2007-2008)
and America’s Top Doctors (2007, 2008).
Victoria Werth, M.D.
University of Pennsylvania
Dr. Victoria Werth is a professor of dermatology at the University of Pennsylvania and a member of the IPPF Medical Advisory Board. She has worked to
coordinate an international group working on outcome definitions and severity measures for pemphigus and pemphigoid. Dr. Werth has designed and
conducted several clinical trials for pemphigus and has a subspecialty clinic
at the University of Pennsylvania devoted to autoimmune skin disease.
Terry Wolinsky-McDonald, Ph.D.
Licensed Clinical Psychologist, Pittsburgh, PA
Speaker Biographies
Dr. Terry Wolinsky-McDonald is a member of the IPPF Board of Directors and
frequent contributor of the IPPF Quarterly. Her articles focus on the psychological aspects of living with P/P in patients, caregivers, and family members.
Dr. McDonald specializes in helping others cope with adjustment, mood
disorders, chronic illness and pain issues. She continues to publish internationally on her findings and provides classes offering continuing education
credits through the University of Pittsburgh. In recognition for her efforts, Dr.
McDonald was honored with the IPPF Star Award for Eduction in 2008.
Marc Yale
Certified Peer Health Coach, Colorado Springs, CO
Marc Yale is a Certified Peer Health Coach for the IPPF. He is a MMP patient and
has turned his disease into a strength as a Peer Health Coach for others. Marc
helps other P/P patients through one-on-one sessions, guiding them through
tough times and advising them on how to make improvements in their daily
lives. Marc’s work in the IPPF Health Management Program continues to improve the quality of life for those affected by P/P.
Philadelphia PA • April 30-May 2, 2010 | 11
Speaker Slides - Dr. Anhalt
AN
INTRODUCTION
TO PEMPHIGUS
& PEMPHIGOID
Introduction to Pemphigus & Pemphigoid - Dr. Anhalt
www.pemphigus.org/registry
BREAKOUT Slides - Michelle Greer, RN
IVIG
THERAPY FOR
PEMPHIGUS
AND
PEMPHIGOID
IVIG Threapy for Pemphigus & Pemphigoid - Michelle Greer
Crescent Healthcare, Inc.
Speaker Slides - Drs. Stanley/Payne
DEVELOPMENT
OF NOVEL
TREATMENT
STRATEGIES
FOR
PEMPHIGUS
Development of Novel Treatment Strategies - Drs. Payne & Stanley
Speaker Slides - Dr. Sinha
WHY DO
PATIENTS
FLARE?
Why Do Patients Flare? - Dr. Sinha
Speaker Slides - Danielle Malchano, RN
WOUND CARE
SUPPLIES
Wound Care Suplies, - Danielle Malchano
Speaker Slides - Dr. Sirois
ORAL AND
DENTAL IMPACT
AND CARE IN
PEMPHIGUS
AND
PEMPHIGOID
Oral and Dental Impact and Care - Dr. Sirois
Speaker Slides - Dr. Fett
MEDICATIONS
USED TO TREAT
PEMPHIGUS &
PEMPHIGOID
Medications Used to Treat P/P - Dr. Fett
Autoimmune diseases are the 3rd most prevalent group
of diseases in the US after cardiovascular disease and
cancer with 5-10 percent of the population affected (79%
female). Over 80 different types of autoimmune disease
are known, and they are among the top 10 leading
causes of death in females > 64 years of age.
“PV serves as an excellent model for the
investigation of the mechanisms that govern the
development and progression of human organspecific autoimmune disease because the clinical
course of disease (blister formation) can be
easily, visually accessed without the need for
invasive procedures. On the foundation of the
clinical information collected in patient databases
and associated sample collections, we can
systematically investigate disease mechanisms
by relating clinical data to genetic, genomic, and
proteomic disease factors. The illumination of
genetic risk factors along with biomarkers with
predictive and prognostic value and mechanisms
of immune dysregulation in PV can be expected
to yield relevant insights into general mechanisms
of autoimmunity, and facilitate the development
of novel therapies to help relieve the burden of
human autoimmune disease.”
Dr. Animesh Sinha
IPPF Medical Advisory Board
www.pemphigus.org/registr y
Speaker Slides - Dr. Werth
TREATMENT
ADVANCES IN
AUTOIMMUNE
BULLOUS
DISORDERS
Treatment Advances in Autoimmunce Bullous Disorders - Dr. Werth
Personal Meeting Notes
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IPPF Annual Meeting • Philadelphia PA • April 30-May 2, 2010 | 83
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IPPF ANNUAL MEETING EVALUATION FORM
Please answer the following questions on a scale of 1-6 with 1 being the lowest and 6 being the highest.
1. It was easy to find the meeting location.
1
2
3
4
2. The speakers presented material in a way that was easy for me to understand.
1
2
3
4
3. My questions were answered by the speakers (during presentations or in Q&A)
1
2
3
4
4. I feel better prepared to talk with my doctor about my disease and to make good
1
2
3
4
choices about my care.
5. I feel I have a resource I can turn to for help in answering questions about my
1
2
3
4
disease.
6. I feel I could better manage my disease using the HMP or Peer Health Coach.
1
2
3
4
7. I feel better about my disease because I have heard the stories of others like me.
1
2
3
4
8. I would review the presentations if they were available by video online.
1
2
3
4
9. I would participate in an online, “virtual” Annual Meeting if it was possible.
1
2
3
4
10. I plan to attend future Annual Meetings ONLY if they are within 250 miles of me.
1
2
3
4
Please explain any items you rated as “1” so that we can better address these concerns at future meetings.
Question # / Comments
How did you get here and far did you travel to attend this year’s Annual Meeting?
Car Plane Train Less than 100 miles
100-249 miles 250-500 miles
What do you anticipate your final costs will be for attending this year’s Annual Meeting?
Under $250
$250-$499
$500-$999
Over $1,000
How did you find out about this year’s Annual Meeting (circle all that apply)?
Quarterly
IPPF Website IPPF Email Blast
IPPF Email Discussion Group
5
5
5
6
6
6
5
6
5
6
5
5
5
5
5
6
6
6
6
6
Over 500 miles
Physician
Flyer Friend Other _________________________________
Why did you attend this year’s Annual Meeting? What were your expectations?
What things would you like to see changed/added/deleted?
Feel free to provide any additional comments on the reverse side of this form.
Would you like to be contacted regarding this Evaluation?
If “YES”, please provide us with the following information:
YES
NO
Name:
Best WAY to contact you: Phone: Best TIME to contact you (circle all that apply): Mornings
Email:
Afternoons
Evenings
Or specific time:
IPPF ANNUAL MEETING EVALUATION FORM
ADDITIONAL COMMENTS
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IPPF Room Locations at the Hotel
Join the IPPF throughout the weekend for a memorable time. We will be using several rooms in the Sheraton
Society Hill Hotel so please make sure you are in the right place. If you have any questions, feel free to ask a
member of the IPPF staff or Board of Directors. The room names and days are also provided to help hotel staff
assist you.
Things To Do Near the Hotel
Arts & Culture
Independence Seaport Museum 0.1 km/0.1 miles
Old City Art Galleries 0.3 km/0.2 miles
Liberty Bell 0.4 km/0.3 miles
Independence Hall 0.4 km/0.3 miles
National Constitution Center 0.5 km/0.3 miles
Betsy Ross House 0.5 km/0.3 miles
Philadelphia Museum of Art 3.2 km/2.0 miles
Rodin Museum 4.8 km/3.0 miles
Community
Thomas Jefferson University/Hospital 0.7 km/0.4 miles
University of Pennsylvania Hospital 0.8 km/0.5 miles
Philadelphia Convention Center 1.0 km/0.6 miles
Temple University 4.8 km/3.0 miles
University of Pennsylvania 6.4 km/4.0 miles
Corporate Offices
One Beacon / CGU Insurance 0.4 km/0.3 miles
Rohm and Haas 0.4 km/0.3 miles
Verizon/Bell Atlantic 1.2 km/0.8 miles
Campbell’s Soup 1.6 km/1.0 miles
Comcast 2.8 km/1.7 miles
Local Attractions
Customs House 0.2 km/0.1 miles
Benjamin Franklin Court 0.2 km/0.1 miles
76 Carriage Co (Horse-Drawn Carriage Tours) 0.2 km/0.1 mi
Spirit of Philadelphia 0.3 km/0.2 miles
Public Ledger Building 0.5 km/0.3 miles
Philadelphia Orchestra 3.2 km/2.0 miles
Nearby Destinations
Penn’s Landing 0.1 km/0.1 miles
Downtown 1.0 km/0.6 miles
Lancaster Amish Country 50.0 km/31.1 miles
Pennsylvania Amish Country 80.5 km/50.0 miles
Atlantic City, NJ 80.5 km/50.0 miles
Recreation
Independence National Park 0.3 km/0.2 miles
Adventure Aquarium 4.8 km/3.0 miles
Sesame Place 37.0 km/23.0 miles
Beaches of New Jersey Shore 80.5 km/50.0 miles
Shopping
Gift Shop 0.0 km/0.0 miles
South Street 0.5 km/0.3 miles
Franklin Mills Mall 29.0 km/18.0 miles
Transportation
Philadelphia International Airport 12.9 km/8.0 miles
Entertainment
Ritz Theaters 0.2 km/0.1 miles
Arden Theatre 0.4 km/0.3 miles
Curtis Center 0.4 km/0.3 miles
Lincoln Financial Field 8.1 km/5.0 miles
Wachovia Center (Home of the 76ers) 8.1 km/5.0 miles
Citizen’s Bank Ballpark 8.1 km/5.0 miles
Philadelphia Eagles 9.7 km/6.0 miles
Philadelphia Phillies 9.7 km/6.0 miles
Philadelphia Flyers 9.7 km/6.0 miles
Philadelphia 76ers 9.7 km/6.0 miles
Places to Eat
Sheraton Society Hill Hotel (prices vary)
Zahav (Israeli, Middle Eastern $$$) 250 feet
Positano Coast-Aldo Lamberti (European, Italian $$) 500 feet
City Tavern (American $$$) 0.1 miles *built in 1773
Q BBQ & Tequila (Bar, Seafood, BBQ $$$) 0.2 miles
Zentos (Sushi Bar $$) 0.2 miles
Philadelphia Orchestra 3.2 km/2.0 miles
Market Street (many places to eat) 2 blocks North)
Things To Do Near the Hotel
Thank You to our Sponsors!
The IPPF would like to thank those who donated items for this year’s Annual Meeting. A very special thanks goes
to Terry Wolinsky-McDonald, Sharon Hickey, Donna Rabena, Mary Lou Neeley, and Cathy Burns for getting
several of the door prizes and raffle items for us. The special, “above and beyond” work not only allows the IPPF to
give great items to meeting attendees, but helps spread awareness about the Foundation and our cause.
California Pizza Kitchen - $20 meal coupons
e.b. PEPPER - purse
Framework - framed art
The Franklin Institute - museum passes and IMAX passes
IZZAZU Salon - gift basket
Mrs. Mary Lou Neeley - handmade items
The IPPF thanks our SPONSORS for their support.
Please show your support and appreciation by visiting their websites for more information on their products and services.
Products, gift certificates, and tickets were donated by the following:
stay informed • get involved
w w w.pemphigus.org/facebook
w w w.pemphigus.org/t witter
communit y.pemphigus.org
International Pemphigus & Pemphigoid Foundation • 2701 Cottage Way #16 • Sacramento CA 95825 • (916) 922-1298 • www.pemphigus.org

Patient /Doctor Meeting - Pemphigus Pemphigoid Foundation

Transcription

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