The IPPF Awareness Program seeks to reduce diagnostic delays 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 Awareness 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, who have the unique opportunity to shorten diagnosis times.
The Awareness Program receives its funding from the Sy Syms Foundation and The Unger Family.
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Awareness website content was reviewed in part by the IPPF Dental Advisory Council.
Awareness Program Goals and Objectives
The IPPF aims to increase symptom recognition of PV/MMP among dental professionals, thereby decreasing diagnostic delays and improving patient outcomes.
Our vision for PV/MMP patients:
- Patients visit dentists who recognizes their symptoms as PV/MMP
- Patients receive a biopsy or a referral for a biopsy at their first dental appointment
- Patients receive a PV or MMP diagnosis within three months of symptom onset
- If a patient searches their symptoms online, they find the IPPF and its resources
- A decrease in the number of healthcare professionals the average PV/MMP patient sees before receiving a correct diagnosis
- A decrease in the number of months it takes the average PV/MMP patient to receive a correct diagnosis
- Engage in media and marketing strategy to facilitate increased recognition and diagnosis of PV/MMP.
- Send Patient Educators to a minimum of 19 U.S. dental schools to provide a personal testimonial and emotional appeal in order to reinforce the importance of considering PV/MMP in their clinical differential diagnosis.
- Perform outreach to dental professionals by providing continuing education (CE) courses to help reinforce their recognition of the clinical presentation of PV/MMP and/or best practices for performing biopsies.
- Develop and implement a PV/MMP Awareness Ambassador Program in which IPPF community members provide outreach to dental professionals and raise local awareness of PV/MMP.
The International Pemphigus & Pemphigoid Foundation (IPPF)
The International Pemphigus & Pemphigoid Foundation (IPPF) is dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid. Pemphigus and pemphigoid (P/P) are rare autoimmune blistering diseases affecting the skin and/or mucous membranes. The IPPF provides support services to thousands of P/P patients, caregivers, and medical and dental professionals.