Fibrodysplasia Ossificans Progressiva, otherwise known as FOP, is a 1 in a million disorder. There are about 900 confirmed cases globally, making it an ultra rare disease. Currently, there is no cure for FOP.

FOP is the only medical condition that turns one organ system (muscles, tissues, and ligaments) into another – bone. This condition leads to ossification of soft tissues, slowly creating a second skeleton. It’s one of the most debilitating and disabling conditions.

FOP takes away one’s physical freedom over time. It makes it difficult for us to move and perform daily tasks that is quite simple for others. Reaching above your head, bending to the ground, brushing your hair, and turning your head side to side are just some of the things that are difficult for FOP patients.