About

Fibrodysplasia ossificans progressiva (FOP) is a genetic condition in which skeletal muscle and connective tissue, such as tendons and ligaments, are gradually replaced by bone. This leads to bone formation outside the skeleton that progressively restricts movement.

It is extremely rare, with an approximate worldwide prevalence of 1 in 2 million, and is often misdiagnosed and mismanaged due to the lack of awareness.

Early diagnosis is crucial as certain tests and treatments for differential diagnoses can cause flare-ups and encourage bone growth.

This expert-led program aims to raise awareness and knowledge amongst physicians who may be presented with a baby or child with FOP.

Through a variety of educational formats, the program will cover clinical diagnosis, clinical staging, complications, and current and future management options. There is also an opportunity for you to share your experiences through the ‘Submit a case’ form.

Please explore the site and share with your colleagues so that we may raise awareness and educate on this devastating condition with the hope that one day treatment may progress to the point of cure.