International FOP Awareness Day

FOP Awareness Day Countdown

Join us April 23 as we honor the 10th anniversary of the discovery of the FOP gene, ACVR1,
and celebrate the milestones your support has helped the IFOPA reach.

Raise Awareness!

Raise Funds!

Give to $10K for the 10th Anniversary of the FOP Gene Discovery!


  • April 23, 2006 - FOP gene, ACVR1, discovered by researchers at the University of Pennsylvania School of Medicine
  • 2006 - The IFOPA L.I.F.E. Awards established. More than $50,500 has been granted to individuals living with FOP to purchase specific items which allow them to Live Independently with Full Equality (LIFE).
  • 2007 - The IFOPA formed the International President’s Council (IPC) to better support individuals living with FOP in specific regions around the world. Today, there are 23 IPCs in 19 countries working together with the IFOPA.
  • 2010 - The IFOPA first offered medical binders to help individuals living with FOP keep track of their health. Today, binders are available in nine languages.
  • Oct. 2011 - Doctors from the University of Pennsylvania School of Medicine announced they developed a new genetic approach to specifically block the damaged copy of the FOP gene in cells while leaving the normal copy untouched
  • Nov. 2013 - Two industry-sponsored research studies launched with individuals living with FOP volunteering to participate. IFOPA also held its 25th Anniversary Celebration and FOP Family Gathering in Orlando, Fla.
  • July 2014 - FOP entered the clinical trial era with the announcement that Clementia Pharmaceuticals initiated a Phase 2 clinical trial of palovarotene for the treatment of FOP
  • Nov. 2014 - IFOPA hosted the first FOP Drug Development Forum for clinicians, researchers and the pharmaceutical industry
  • April 2015 - The IFOPA launches its first Competitive Research Grant program and awards three grants totaling $124,800
  • July 2015 - The IFOPA launches the global FOP Connection Registry for individuals living with FOP
  • Since our founding in 1988, and thanks to the generosity of fundraisers and donors, the IFOPA has funded over $8.9 million dollars in FOP research to find treatments and a cure!

Thank you for promoting FOP Awareness Day and supporting our vision to cure FOP!