What is FOP?

Child's foot with malformed big toes

Fibrodysplasia Ossificans Progressiva (FOP) is an extremely rare and disabling genetic condition causing bone to form in muscles and other soft tissue. Whenever extra bone is formed across joints it permanently restricts movement. It is a progressive disease, and there is currently no treatment or cure. Most people with FOP experience severe physical disability and have a limited life expectancy. It has no ethnic or religious pattern. It does not affect a person’s intelligence.

FOP is accelerated by trauma, so invasive diagnostic medical procedures can exacerbate the condition. FOP is commonly misdiagnosed as cancer, with surgical intervention causing catastrophic consequences. Malformation of the big toes is often the key to early identification of the condition.

Of the estimated 2500 cases across the globe, Australia currently has 15 confirmed cases.

The International FOP Association (IFOPA) has made a series of videos to help people understand this condition. You can see the ‘What is FOP’ video, and many others on our videos page.