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.