Patient Directory: Coming Soon

Please help us create the most up-to-date online FOP Patient Directory by making sure we have your and your child's (if applicable) most current information. You can also take advantage of the all new opportunity to add your photo, if you like. The IFOPA Patient Directory is the place to find and connect with FOP families in your country and around the world. 

Please note that the IFOPA Patient Directory is for the use of patients and parents. The FOP Registry is a separate database and is where you input FOP diagnosis and disease progression information that is used by the research community. 

Click here to update your information for the directory

By updating your information, you're ensuring that you don't miss out on: 

  • Your FOP Community eNewsletter
  • Your monthly issue of the FOP Connection eNewsletter
  • Connecting with your friends in the FOP community


Individuals living with FOP can also join the IFOPA or renew their IFOPA membership using the Patient Directory form. Parents and others that are supportive of the FOP community can join or renew their membership at this link.

Spread Awareness

With your response, we'll send you a package of FOP awareness cards and bracelets to help you educate more people about FOP. Don't miss out...update your information today!


Please contact the IFOPA for assistance.

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