Our Mission
To improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.
Our Vision
To find a cure for pemphigus and pemphigoid.
IPPF Overview
The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. To help fulfill those objectives, we:
- Offer a “find a doctor” tool to help patients locate knowledgeable medical professionals;
- Provide a number of valuable and popular patient support services;
- Publish current disease information, as well as a quarterly journal with news, useful information, medical updates, personal stories, and more;
- Host an annual Patient Education Conference;
- Collaborate with pharmaceutical companies and other industry partners on the leading edge of disease treatment;
- Provide information about current clinical trials and disease research;
- Maintain relationships with Congressional representatives and others who may be able to encourage or research funding.
To ensure that we are able to provide the most current information about the disease and treatments, we have developed and continue to maintain close relationships with doctors and leaders in the medical community, including the National Institutes of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health, and the American Academy of Dermatology (AAD). The IPPF is also an active member of a number of other organizations that help us fulfill our role as patient advocates and enable us to have more impact as we work together: National Organization of Rare Disorders (NORD), the Coalition of Skin Diseases (CSD), Derma Care Access Network (DCAN) and the International Alliance of Dermatological Patient Organizations (IADPO).
Other Support Sites and Affiliates
A Brief History of the IPPF
2019
2018
U.S. Food and Drug Administration (FDA) approves Rituxan® for the treatment of adults with moderate to severe PV (the first FDA-approved drug for pemphigus in 60 years)
2017
IPPF Awareness Campaign becomes the IPPF Awareness Program, a permanent initiative designed to promote education and awareness of P/P in the dental community.
2016
Marc Yale becomes the Executive Director
2014
IPPF Awareness Campaign is developed as a three-year initiative to raise awareness about pemphigus and pemphigoid
2012
15th Annual Patient Education Conference is held in Boston, MA
2009
Janet Segall retires as Executive Director
2007
50th issue of the Quarterly is published
2006
Foundation changes its name to the International Pemphigus and Pemphigoid Foundation (IPPF)
2005
Foundation attends its first Capitol Hill Day and patients/doctors meet internationally in Israel, Italy, and London
2002
Foundation changes its name to the International Pemphigus Foundation and launches its first website
2001
First International Pemphigus Foundation sponsored Scientific Conference is held
1998
First Annual Meeting is held in Chicago, IL
1997
The PV Foundation News becomes the Quarterly
1995
First issue of The PV Foundation News newsletter is published and the Foundation changes its name to The Pemphigus Foundation
1994
Janet Segall forms The National Pemphigus Vulgaris Foundation with 501(c)(3) status
1983
Janet Segall (IPPF Founder) is diagnosed with pemphigus vulgaris (PV)