International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA)

Fibrodysplasia ossificans progressiva (FOP) remains one of the most complex and devastating ultra-rare genetic disorders known to medicine. Affecting approximately one in a million people worldwide, the condition progressively transforms soft connective tissue into bone, leading to severe mobility limitations, respiratory complications and reduced life expectancy. Recent global estimates suggest that roughly 1,000 individuals are currently diagnosed with FOP across multiple countries, underscoring both the rarity of the disease and the challenges associated with research and clinical development.