Patients and Families

Patients and Families


Explore Resources

Whether you or someone you love has been diagnosed with fibrodysplasia ossificans progressiva (FOP), we are here to provide support, education and resources to help you understand the disease better and improve your quality of life. Explore the pages below to learn more about living with FOP and get inspired by stories of courage and strength.

We encourage you to use explore this vast network of resources for:






Action Through Research

  • Register for the FOP Registry, a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. It is one of the greatest, most significant ways every patient can contribute to FOP research. 
  • Contribute to research and development by donating bio-samples to the IFOPA BioBank.

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