About IFOPA

What is the International FOP Association (IFOPA)?

A 501(c)3 nonprofit organization that provides hope to individuals with FOP and their families through education and support programs while funding research to and a cure for the rare genetic condition Fibrodysplasia ossificans progressiva (FOP).

The IFOPA Journey

The IFOPA was founded in 1988 by a young woman with FOP named Jeannie Peeper who had never met anyone else with the disease. This isolation was typical before the IFOPA was formed, and Jeannie’s goal was to bring people with FOP together. Today, the IFOPA is the umbrella organization for people with FOP worldwide and the place to come for education and support.

International President’s Council

The IFOPA’s International President’s Council (IPC) is a network of volunteers who are committed to helping their national and regional FOP communities by keeping FOP families informed about treatments and research. IPC representatives in Argentina, Australia, Brazil, Canada, China, France, Germany, Italy, Malaysia, Poland, Russia, Serbia, South Africa, Spain, Sweden, The Netherlands, United Kingdom and United States of America work together with the IFOPA to provide a global network of support, education, awareness and fundraising for FOP research. Find a FOP National Organization.

IFOPA Support

The IFOPA gives support to 1,000 individuals worldwide representing over 50 countries. More than 450 of these individuals have FOP; more than 280 of them are from outside the United States. 

Financials, Bylaws & Guidelines

We seek to be transparent with donors, fundraisers and patients. When you donate, fundraise or connect with IFOPA for services, you are putting your trust in us. We are committed to providing the highest level of transparency and accountability, so we provide these documents to you for reference. Please contact us if you have any questions, and for more information, please visit the following links:

- Financials
IFOPA's Industry Guidelines for engaging pharmaceutical companies
IFOPA Bylaws revised July 14, 2015 can also be downloaded here. 

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