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

July 06, 2020

You're Invited to Participate!

Study on Effects of COVID-19 on Endocrine Disorders

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June 11, 2020

IFOPA Turns 32 Years Old

June 09, 2020

Nathaniel Padilla Produces Mask Mounts to Keep People Safe


Ability to Self-replenish

Tuesday, July 21, 2020 at 08:00 PM

Non-judgement/Self-supporting Talk

Tuesday, August 18, 2020 at 08:00 PM

Hope and Optimism

Tuesday, September 15, 2020 at 08:00 PM

FOP Ashley's Cure Gala

Monday, October 05, 2020 at 06:00 PM

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

Saturday, October 10, 2020 at 09:00 AM

Sense of Coherence

Tuesday, October 20, 2020 at 08:00 PM

Social Support

Tuesday, November 24, 2020 at 08:00 PM

Joshua's Future of Promises 2020 Bingo for a Cure

Sunday, November 29, 2020 at 01:00 PM

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