Living with FOP

FOP_toes.pngIf you or a family member has just received a diagnosis of fibrodysplasia ossificans progressiva (FOP), you will have plenty of questions. The IFOPA provides information on this site to help answer many of them.

First, please fill out the FOP Patient Directory form. This allows us to have your current contact information so that we can send you updates about research, clinical trials and other communication. Signing up will also include you in an online, searchable patient directory coming soon so that you will be able to connect with others in the FOP community all around the world.


Remember that you are not alone.

Please take some time to navigate the site to learn about FOP and to find support for the days ahead. You may need time to adjust to the new diagnosis, so go at your own pace to educate yourself about FOP.


Suggested Resources

IFOPA on Pinterest 

You can also find valuable tools and tips on our Pinterest page, with boards such as Self Care, Dressing Aids, School Resources and more. Most all of our pins are suggestions from the FOP community.

Please feel free to contact us with any questions.

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