The FOP Registry team wants to hear from you

The FOP Registry, sponsored by the IFOPA, collects disease information directly from individuals with FOP through a secure website. Data from the Registry will be used to help researchers, clinicians and drug developers to better understand FOP.

The FOP Registry is one of the most significant investments in the worldwide FOP community made by the IFOPA. As such, we would like your feedback on challenges you might experience participating in the Registry and, for those not participating, understand why you aren’t, and what we can do to support your participation.

This quick survey doesn’t ask any health information. If you would like to include your name at the end, you will be entered in a drawing for a $25 Visa gift card. If you’d like to be included in the drawing, please reply by Sept. 30.

Thank you in advance for your input,
The FOP Registry Staff and Advisory Boards

Please select the most appropriate survey to complete. 

If you’re not sure of your registry status, send an email to [email protected] and we will verify for you.