Related Experiment Video
Updated: May 29, 2026
05:05
Technique of Conjunctival Biopsy and Direct Immunofluorescence for Diagnosing Mucous Membrane Pemphigoid
Published on: June 17, 2025
The International Pemphigus and Pemphigoid Foundation
Dédée F Murrell1, Victoria P Werth, Janet Segall
1Department of Dermatology, St George Hospital, University of New South Wales, Gray Street, Kogarah, Sydney, NSW 2217, Australia.
Dermatologic Clinics
|September 20, 2011
Summary
The International Pemphigus Pemphigoid Foundation (IPPF) supports over 4500 members with autoimmune bullous diseases. It offers patient navigation, specialist recommendations, and maintains a global patient registry.
Area of Science:
- Autoimmune Bullous Diseases
- Patient Advocacy and Support
- Rare Disease Research
Background:
- The International Pemphigus Pemphigoid Foundation (IPPF) was established in 1997.
- The organization has grown to include over 4500 members.
- IPPF focuses on supporting individuals with pemphigus and pemphigoid.
Observation:
- IPPF offers peer health coaching to assist patients in navigating the healthcare system.
- The foundation provides recommendations for dermatologists and specialists experienced in autoimmune bullous diseases.
- IPPF facilitates connections between patients and expert medical professionals.
Findings:
- The IPPF manages the largest global registry for pemphigus and pemphigoid patients.
- Future plans include opportunities for biospecimen collection within the registry.
- The foundation convenes formal meetings twice annually, featuring invited speakers.
Implications:
- Enhanced patient navigation and access to specialized care for autoimmune bullous diseases.
- Facilitation of large-scale research through a comprehensive patient registry and biospecimen collection.
- Fostering a collaborative environment for patients, clinicians, and researchers in the field of autoimmune bullous diseases.
