To improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.
To find a cure for pemphigus and pemphigoid.
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 physician referral service to help patients find the best medical care possible
- Provide a number of valuable and popular patient support services
- Publish informational brochures, pamphlets and a quarterly newsletter with news, useful information, medical updates, personal stories and more
- Run an annual Patient/Doctor meeting
- Collaborate with pharmaceutical companies on the leading edge of treating these diseases
- Provide up-to-date information about current clinical trials and research on the disease in which patients may be able to participate
- Maintain relationships with Congressional representatives and others who may be able to encourage or provide 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
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)
IPPF Awareness Campaign becomes the IPPF Awareness Program, a permanent initiative designed to promote education and awareness of P/P in the dental community.
Marc Yale becomes the Executive Director
IPPF Awareness Campaign is developed as a three-year initiative to raise awareness about pemphigus and pemphigoid
15th Annual Patient Education Conference is held in Boston, MA
Janet Segall retires as Executive Director
50th issue of the Quarterly is published
Foundation changes its name to the International Pemphigus and Pemphigoid Foundation (IPPF)
Foundation attends its first Capitol Hill Day and patients/doctors meet internationally in Israel, Italy, and London
Foundation changes its name to the International Pemphigus Foundation and launches its first website
First International Pemphigus Foundation sponsored Scientific Conference is held
First Annual Meeting is held in Chicago, IL
The PV Foundation News becomes the Quarterly
First issue of The PV Foundation News newsletter is published and the Foundation changes its name to The Pemphigus Foundation
Janet Segall forms The National Pemphigus Vulgaris Foundation with 501(c)(3) status
Janet Segall (IPPF Founder) is diagnosed with pemphigus vulgaris (PV)