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


Individual State Rare Disease Day Events

Wednesday, February 17, 2021 at 08:00 AM through March 04, 2021

Rare Across America Every Voice, In Every District, Matters

Monday, February 22, 2021 at 12:00 PM through March 05, 2021

24 Hours of Rare

Sunday, February 28, 2021 at 07:00 AM through March 05, 2021

Don't Miss the Quarter One Advocacy Series Webinar

Monday, March 22, 2021 at 06:00 PM

A Rare Disease Leadership Interactive Webinar

Tuesday, March 23, 2021 at 11:00 AM

FOP Bereaved Families Virtual Meetup on March 25

Thursday, March 25, 2021 at 07:00 PM

Self-Care and Meditation Variations

Saturday, March 27, 2021 at 12:00 PM

Riding for Tyler - #cureFOP

Saturday, April 24, 2021 at 10:00 AM

Rare on the Road Leadership Tour In-Person Training and Networking

Saturday, May 01, 2021 at 12:00 PM

Rare on the Road Leadership Tour In-Person Training and Networking

Saturday, May 15, 2021 at 12:00 PM

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