International Pemphigus & Pemphigoid Foundation
Description
The IPPF is a patient support organization for those suffering from the rare, autoimmune diseases pemphigus and pemphigoid. Our 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 for Rare Diseases (NORD), Coalition of Skin Diseases (CSD), American Autoimmune Related Diseases Association (AARDA), and the National Coalition for Autoimmune Patient Groups (NCAPG).
Tell your friends
Quiz
