The IFOPA Celebrates the Second Year of the FOP Registry

2017 FOP Registry Annual Report

The FOP Registry is the easiest and most long-lasting way for those living with FOP to contribute to research. 

The Registry is a global, voluntary database where FOP'ers input basic demographic information and details about their FOP diagnosis and experience. Participation is through a single enrollment survey and 6-month follow-up surveys. Surveys can be completed by the person with FOP or a family member, friend or caregiver. 

Data from the FOP Registry may help speed up research by providing important disease information to researchers and drug developers. Data from the Registry may also help medical professionals improve how they treat the disease.

Your data fuels FOP research. The FOP Registry Medical and Patient Advisory Boards are pleased to share the 2017 FOP Registry Annual Report with the FOP community. If you are interested in contributing to the Registry, visit; enrollment is quick and free for all participants.

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