Organizations Filed Purposes:
Medical information, awareness, research, and patient support for an orphan disease.
Patient support and education - the Foundation operates a website that connects patients to the Foundation, where they can receive information from various publications and participate in discussion groups and Town Hall meetings with doctors. The IPPF conducted 5 Town Hall conference calls averaging 25 patients and caregivers per session. Over 25,000 unique visitors utilized the website. Three peer health coaches and numerous support groups provide patient support by geographical region. In addition, the Foundation coordinated and attended several patient meetings and physician scientific meetings. The Annual Patient Conference was attended by more than 120 individuals.
Awareness Campaign - the goal is to increase awareness of pemphigus and pemphigoid symptom recognition, and establish best treatment practices among the dental community. The goal is to decrease diagnostic delays resulting in better patient outcome by educating dentists in training and in practice through in-person presentations, videos, and materials.
Public awareness and advocacy - the Foundation seeks to educate dentists, dermatologists, and other medical professionals about Pemphigus and Pemphigoid to reduce diagnostic delays and educate the public about the disease. A disease Registry has collected illness and treatment data on over 910 patients. The Peer Health Coaches help collect infomormation on disease activity, treatment protocol, and drug outcomes from patients. Over 800 sixteen-page, full-color newsletters are delivered each quarter to patients, doctors, dentists, dermatologists, and disease specialists.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Mindy Unger | Director | 1 | $0 |
| Debra Temperman | Director | 1 | $0 |
| Ramesh Swamy | Director | 1 | $0 |
| Mert Erogul | Director | 1 | $0 |
| Sonia Tramel | Treasurer | 2 | $0 |
| Mirella Bucci | Secretary | 2 | $0 |
| David Baron | President | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202012679349301751_public.xml