Living with FOP

If 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.

Here are some suggested links for newly diagnosed families.

You are also welcome to contact us with any questions.

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