About Us

The International FOP Association is a 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). Our mission is to eliminate FOP as a health concern through education, advocacy, research and support.

Our primary sources of funding come from IFOPA special events, public contributions, FOP family fundraising, and private foundations.

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, support FOP research at the University of Pennsylvania School of Medicine at a rate of approximately $500,000 annually and be a life-support to those who suffer from FOP.

To learn more about our Programs and Services, please click here.

As of 2010, our organization has 725 members represented in 57 countries worldwide, with 285 international members (outside the U.S.) with FOP and 180 members with FOP living in the U.S. Thanks to this global community, we have been able to partner with other FOP organizations around the world, including ones established in Argentina, Australia, Brazil, Canada, Germany, Italy, Japan, Peru, Scandinavia, Spain and The Netherlands.

For a snapshot of IFOPA information, please download our IFOPA Facts in Brief sheet.