Presented at the NORD Rare Diseases & Orphan Products Breakthrough Summit®, this study offers a focused look at the insurance experiences and care barriers faced by individuals living with Fibrodysplasia Ossificans Progressiva (FOP) in the United States. As an ultra-rare and progressively disabling condition, FOP leads to episodic flare-ups and irreversible bone formation that significantly impact mobility and quality of life. By examining health insurance profiles, levels of insurance literacy, and access to medical and dental care, the study provides practical insights that can help shape future education and support initiatives for the FOP community.