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A Look Back on the IPPF: Good Memories and Great Friendships

As a member of the IPPF BOD and one of Janet’s longest standing supporters, I wanted to relect on where Janet brought us fromand to.

Janet Segall has had many outstanding accomplishments since she started the Foundation in 1994. In fact, it could be said that it was a textbook organizational growth plan. In that first year, Janet was a single parent from San Francisco with a teenage daughter, Tina. Janet had been living with Pemphigus Vulgaris for 10 years and could not find the needed support anywhere.

With donations from family and friends, she started a non-profit 501(c)(3) organization called the National Pemphigus Vulgaris Foundation (NPF), later International Pemphigus Foundation (IPF), and most recently the International Pemphigus Pemphigoid Foundation (IPPF). She worked hard to form a Foundation Board of Directorswhich has grown to 12 members. Janet then started networking with the best dermatologists in the United States and Canada (and later the world) with the help of Dr. Grant Anhalt of Johns Hopkins University and Dr. Jean-Claude Bystryn of New York University. A Medical Advisory Board was soon formed which now has 20 members from all over the world.

Physicians and pemphigus researchers started talking to each other with her help and have developed protocols for drugs such as Imuran, IVIG and Rituxan. With Janet’s encouragement, many of our pemphigus and pemphigoid physicians referred their patients to the Foundation. Janet was an early supporter of the internet which provided a fantastic tool for patients to discover the organization and communicate with each other via an e-mail list server.

A quarterly newsletter provided vital information to patients and physicians. Patient Support Groups were started in Los Angeles, San Francisco, New York, and Toronto with Boston, Philadelphia, England, Israel and Italy soon following. The next step was an annual meeting. The Annaul Patient/Doctor meetings connect patients and caregivers with the latest information. The IPPF also participates with major dermatology organizations as well as with the National Institute of

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Arthritis and Musculoskeletal and Skin Diseases (NIAMS), International Allince of Patient Organziations (IAPO), and the Coalition of Skin Diseases (CSD), to name a few. Our organization has even spoken to members of the United States Congress on autoimmune diseases and health care funding.

Today we have outstanding partnerships with many major drug and healthcare companies and our partnerships with them have helped research and patient profiling. The Foundation’s budgets grew from $10,000 in its first year to a budget which now provides for an office in Sacramento, CA with an outstanding staff which serves and provides support to patients from around the world.

Most importantly, Janet has made life better, healthier and happier for countless people worldwide. As the ultimate tribute, Janet found the right physicians at a critical moment and saved MY life. To show my gratitude and offer guidance of the IPPF’s future, I serve as Secretary/Treasurer on the Board of Directors. I can think of no better way to show my appreciation to Janet and the Foundation than to donate my time to making the IPPF better each and every day.

Thank you Janet, for your unselfish gift of vision, support, and sacrifice to pemphigus and pemphigoid patients!

Lee Heins

Director, IPPF


Posted in Issue 58 - Fall 2009


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.