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

Latest News

April 01, 2020

Lifetime Grant Amount Increases for the Harold & Elaine Kaplan Quality of L.I.F.E. Awards

Those Living With FOP Now Eligible for up to $1,800 USD

Read More >

March 30, 2020

Coronavirus (COVID-19) Precautions for FOP Families (Updated March 27, 2020)

March 26, 2020

Important Press Release and Letter from Ipsen Announcing They Will Reinitiate Dosing in the MOVE Trial

Dosing to begin again in patients 14 years of age and older currently enrolled in the trial

Read More >


Webinar Session 3: Ability to Self-Calm

Tuesday, April 21, 2020 at 08:00 PM

Joshua's Future of Promises 2020 Bingo for a Cure

Sunday, May 03, 2020 at 01:00 PM

B.A.D. to the Bone - Bike Across Delaware to Cure FOP

Saturday, May 09, 2020 at 09:00 AM

Webinar Session 4: Hardiness

Tuesday, May 19, 2020 at 08:00 PM

Webinar Session 5: Self-care

Tuesday, June 16, 2020 at 08:00 PM

FOP Ashley's Cure Gala

Monday, October 05, 2020 at 06:00 PM

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