Founded in 1988 by Jeannie Peeper, a woman with FOP, the IFOPA was originally established because Ms. Peeper wanted to bring people with FOP together. Today, the organization has grown to include members across the globe.

The IFOPA also supports FOP research at the University of Pennsylvania School of Medicine at a rate of more than $500,000 annually and is a source of invaluable support and comfort to those who suffer from FOP.

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.

The International FOP Association is a 501c3 non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia ossificans progressiva (FOP). 

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

February 23, 2018

Alex Rodriguez Talks Sharing, Studying…and Serious Baking

“It’s So Helpful to Share Tips for Adaptations and Accommodations…”

Read More >

February 23, 2018

Serving the FOP Community—IFOPA Board Meeting Wrap Up

by Amy Gordon, IFOPA Board Chair

Read More >

January 26, 2018

Team #cureFOP to Ride in the Million Dollar Bike Ride

Don't miss this opportunity to raise funds for a new FOP research grant!

Read More >

Events

17th Annual Comedy Show for FOP

Saturday, March 03, 2018 at 07:00 PM

Bingo for a Cure 2018

Sunday, March 18, 2018 at 01:00 PM

2018 Finding a Cure

Thursday, April 19, 2018 at 12:00 PM

2018 FOP Friends, UK Conference & Family Gathering

Friday, May 18, 2018 at 12:00 PM through May 20, 2018

Million Dollar Bike Ride

Sunday, May 20, 2018 at 07:30 AM

Make a Difference

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