The IFOPA is a 501c3 nonprofit organization that provides hope to individuals with FOP and their families through education and support programs while funding research to find a cure and raising awareness for the rare genetic condition fibrodysplasia ossificans progressiva (FOP).

The IFOPA was founded in 1988 by 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 advocacy, education and support.

Our mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. 

Our vision is a cure for FOP, accessible worldwide. 

Programs and Services

The IFOPA provides many programs and services to our members, families and community.

These are a few of those programs:

  • Research  

    The IFOPA catalyzes the highest-quality research on FOP to drive towards treatments and a cure by funding research, developing research infrastructure and promoting research connections. Learn More

  • Patient and Family Support  

    The IFOPA serves as a trusted resource to people with FOP and their families by providing flexible and tailored support and connections through all stages of life with FOP.

    The IFOPA also enables informed decision-making about treatments and research participation by the community of people with FOP.

    The IFOPA equips FOP national organizations based outside of the United States to serve individuals with FOP and their families in their respective geographic areas. 

    Learn More

  • Advocacy and Awareness  

    The IFOPA serves as a voice for people with FOP and families by building targeted awareness and providing targeted advocacy. Learn More


Gear up for Awareness Day with NEW Awareness Day T-Shirts

Friday, March 01, 2024 at 12:00 PM through April 23, 2024

Caregiver Support Group

Monday, April 15, 2024 at 12:00 PM

FOP Italia Symposium and Family Meeting 2024

Saturday, April 20, 2024 at 08:45 AM

A Superhero Walk in Honor of Ethan

Sunday, April 21, 2024 at 10:00 AM

Strengthening Your Support Network

Friday, April 26, 2024 at 12:00 PM

Understanding and Supporting Your Child Through Trauma: Part 1 of 3

Friday, May 03, 2024 at 01:00 PM

FOP Friends Conference and Family Gathering 2024

Friday, May 10, 2024 at 09:00 AM through May 12, 2024

Understanding and Supporting Your Child Through Trauma: Part 2 of 3

Friday, May 10, 2024 at 01:00 PM

Understanding and Supporting Your Child Through Trauma: Part 3 of 3

Saturday, May 11, 2024 at 01:00 PM

Peer Support Group for Adults with FOP

Tuesday, May 14, 2024 at 12:00 PM

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