International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
IFOPA is a nonprofit organization that provides hope to individuals with FOP and their families through education and support programs while funding research to find a cure for the rare genetic condition fibrodysplasia ossificans progressiva (FOP). One of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. FOP means “soft connective tissue that progressively turns to bone.”
The IFOPA is one of the largest funders of FOP research in the world with nearly two-thirds of the annual budget dedicated to funding research grants; providing research infrastructure, including the world’s only patient registry; hosting scientific meetings; and engaging the FOP community in clinical studies and trials.