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

March 28, 2017

Clementia Announces Preliminary Results of its Phase 2 Trial in Treatment of FOP

An important announcement from Clementia

The IFOPA is pleased to share this announcement from Clementia Pharmaceuticals: Top-line Results from Phase 2 Trial of Palovarotene for Treatment of Patients with FOP. Read more.

March 09, 2017

Two Important Ways You Can Be Part of Rare Disease Day on Feb. 28

Easy ideas for getting involved

Read More >

March 09, 2017

Contribute to the new IFOPA Pinterest Boards

Share your ideas

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Samson Strong 5K

Saturday, April 29, 2017 at 10:00 AM

Canadian FOP Network Family Conference & Medical Clinic

Friday, June 16, 2017 at 12:00 PM through June 18, 2017

FOP e.V. Meeting in Valbert, Germany

Friday, July 28, 2017 at 12:00 PM through July 30, 2017

Russia FOP Meeting

Wednesday, August 02, 2017 at 12:00 PM through August 04, 2017

Dinner & Auction for Lincoln

Friday, August 18, 2017 at 12:00 PM

III Encuentro Latinoamericano de FOP

Monday, August 28, 2017 at 12:00 PM through August 29, 2017


Saturday, October 07, 2017 at 12:00 PM

2018 FOP Friends, UK Conference & Family Gathering

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

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