About FOP

Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare 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 has 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 among all healthcare professionals who may be presented with a baby, child, or adult with FOP.

Delivered in a variety of educational formats, the program will cover key signs and symptoms, how to reach a diagnosis safely, the current best practice in management (including complications), and experimental treatment options looking to change the lives of patients with this ultra-rare condition.