International recommendations for FOP

The 21 members of the International Clinical Council on FOP (ICCFOP) and seven consultants from 15 countries, including France, have published:

• a summary of current best clinical practice recommendations for Fibrodysplasia Ossificans Progressiva, focusing on early diagnosis, prevention of injuries and iatrogenic causes of flare-ups, management of flare-ups and functional optimisation,
• these guidelines are detailed and will be updated on the ICCFOP website.

In France, there is a national diagnosis and treatment protocol (PNDS) dedicated to FOP, published in 2024.

Medical guidelines for fibrodysplasia ossificans progressiva. Kaplan FS, Al Mukaddam M, Baujat G et al. JBMR Plus. 2025 Sep 19;9(11):ziaf150.