Patient Directory and Registry

Patients and Families

Patient Directory and Registry

We encourage those living with FOP to join both the FOP Registry and the FOP Patient Directory.

The online FOP Patient Directory is available at This helpful resource contains profiles for individuals with FOP, complete with photos and contact information, so you can get in touch with others in the community. The FOP Patient Directory is especially helpful for connecting with people who live near you or people of a similar age. 

Create your profile for the FOP Directory.

Frequently Asked Questions

Please contact Hope Newport, Family Services Manager, if you have additional questions.

The online FOP Registry is available at The registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. Every person living with FOP has unique information to share. The Registry collects this information to help further research to find treatments and, one day, a cure for FOP.

To contribute to the registry visit and select “Join” to register and complete your Enrollment Survey.  

Learn More About the Registry

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