Fibrodysplasia Ossificans Progressiva or FOP is an ultra-rare genetic disorder that causes bone to form where it should not –outside of the skeleton and in the soft and connective tissues such as in the muscles, tendons and ligaments.1,2
FOP is ultra-rare – only around one or two people per million have the condition.2,3
Getting a diagnosis of FOP is important as it can make a big difference in how you, or your loved one’s, health is managed.2 Knowing it is FOP means that interventions and treatments that might make FOP worse can be avoided as much as possible and mean you get the appropriate care. 3
The hallmark first sign of FOP is having shortened and turned-in great toes at birth.