This website is intended for US Healthcare Professionals only.
This website is intended for US Healthcare Professionals only.

Disease management is focused on supportive care and prevention of HO through avoidance of injury and medical procedures that could lead to a flare-up (including surgery, biopsies, intramuscular injections and invasive dental procedures).1 Preventative management also involves prophylactic measures against falls, respiratory decline, and viral infections.1

What do the guidelines say?

The International Clinical Council (ICC) is an autonomous and independent group of 19 internationally-recognized physicians who are clinical experts in FOP.2

Some key recommendations from the ICC guidelines:*1

The diagnosis of FOP is clinical but requires genetic confirmation. If FOP is suspected, all elective procedures such as surgeries, biopsies, and immunizations should be deferred until a definitive diagnosis is made.

Each patient should have a primary physician who is willing to consult with an FOP expert and help coordinate a local care team.

Patients and their families should be informed about the International Clinical Council on FOP (ICC), the International FOP Association (IFOPA), and country-specific support groups at the time of diagnosis.

*Disclaimer: These recommendations are not the complete guidelines. Please refer to the ICC website to download the full guidance.

Learn about the ICC on FOP and their guidelines

More details and specific recommendations can be found in the ICC guidelines

Find out more

Learn about the IFOPA

Information about the International FOP Association is available for your patients with FOP

Learn more


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Ipsen The information provided here is not intended to replace professional advice. This website has been developed by Ipsen in collaboration with those living with Fibrodysplasia Ossificans Progressiva and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit our website for more information about us, or to contact us directly. Website design and development by Kanga Health Ltd. Website reference DM-0350 NON-US-002452 July 2021