Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest, most disabling genetic conditions known to medicine, causing bone to form in muscles (and other soft tissue) leading to ongoing and permanent restriction of movement. It is a progressive disease and there is no cure. Malformed big toes are nearly always associated with FOP at birth – recognising this sign can prevent misdiagnosis and catastrophic complications from unnecessary investigations that can trigger bone formation.
There are 17 people in Australia and 2 in New Zealand that live with FOP.