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

April 10, 2018

Double Your Gift on FOP Awareness Day

IFOPA_shirtdesign_ART2color.pngInternational FOP Awareness Day is Monday, April 23, 2018. Generous friends of the IFOPA have agreed to help us raise $60,000 throughout the month of April in honor of FOP Awareness. They will match every dollar we receive—up to $30,000! But we must raise $30,000 to be eligible for the match.

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April 10, 2018

SAVE THE DATE for the 2018 FOP Family Gathering

FOPFamilyGathering2018_BaltimoreFNL.jpgWe are excited to announce that the 2018 FOP Family Gathering will be held Nov. 16-18 in Baltimore, Maryland. This is the first time an FOP meeting for families has been held in the Northeast since the year 2000. We hope you will join us. 

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April 10, 2018

FOP Family’s Philanthropy Ripples Through Community

Making an impact one fundraiser at a time

Read More >


2018 Finding a Cure

Thursday, April 19, 2018 at 06:00 PM

Webinar: What You Should Know About ABLE Accounts

Wednesday, April 25, 2018 at 12:00 PM

Clinical Trials Webinar: Clementia MOVE Trial

Thursday, May 03, 2018 at 12:00 PM

5th Annual Battle of the Biotech Bands

Wednesday, May 09, 2018 at 06:30 PM

Clinical Trials Webinar: Regeneron LUMINA-1 Trial

Tuesday, May 15, 2018 at 12:00 PM

2018 FOP Friends, UK Conference & Family Gathering

Friday, May 18, 2018 at 09:00 AM through May 20, 2018

Million Dollar Bike Ride

Sunday, May 20, 2018 at 07:30 AM

Association FOP Poland Meeting

Tuesday, May 22, 2018 at 09:00 AM through May 24, 2018

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