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 find 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 for FOP families to come for education and support.

IFOPA Support

The IFOPA is one of the largest funders of FOP research in the world with nearly two-thirds of the annual budget dedicated to funding research grants; providing research infrastructure, including the world’s only patient registry; hosting scientific meetings; and engaging the FOP community in clinical studies and trials. 

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 

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