Presented at the ASBMR Annual Meeting, this study examines the complex insurance landscape and care barriers faced by individuals living with Fibrodysplasia Ossificans Progressiva (FOP). FOP is an ultra-rare, progressively disabling condition marked by painful flare-ups and irreversible heterotopic bone formation, leading to significant loss of mobility and reduced quality of life. This work highlights the health insurance profiles, levels of insurance literacy, and current medical and dental care experiences of people with FOP in the United States, along with the burdens they encounter in accessing essential care.