The Four Pillars of the IPPF
Patient Support
The IPPF offers a variety of free patient services to help you live an active, productive life. These include our Peer Coach program, Patient Education Webinars, local and regional support groups, Find a Doctor list, annual Patient Education Conferences, and educational resources. These are just some of the ways to connect with the pemphigus and pemphigoid (P/P) community.
Awareness
The IPPF Biopsies Save Lives program seeks to accelerate diagnosis time of pemphigus and pemphigoid (P/P) patients. The average P/P patient sees five doctors over ten months in search of a correct diagnosis. Since the majority of P/P patients present oral symptoms first, the Biopsies Save Lives program focuses on pemphigus vulgaris (PV) and mucous membrane pemphigoid (MMP)—two forms of P/P with increased presentation in the mouth. PV/MMP patients often see a dentist as one of their first clinician contacts. Outreach is therefore directed to dental professionals though student and continuing education, who have the unique opportunity to shorten diagnosis times.
Research
Before new treatment therapies can be developed, investigators need to better estimate the prevalence of P/P, study their pathophysiology, understand treatment patterns, and assess the burden of these diseases on patients. The IPPF encourages research by conducting our Natural History Study, hosting scientific symposia, periodically offering research grants, and maintaining a library of clinical trial information for researchers and healthcare professionals.
Advocacy
Advocacy is defined as public support or recommendation for a particular cause. Advocacy is different from lobbying, which looks to influence a particular elected official or legislation. Advocacy can take place on local, state, or federal levels of government. The IPPF mainly advocates for patients at the federal level, but we encourage our community to support grassroots efforts through various umbrella organizations.