Abstract
Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, severely disabling genetic disorder. Despite recent progress in understanding the clinical characteristics and progression of FOP, a comprehensive assessment of the economic impact of this ultra-rare disease on patients and their families, including direct and indirect medical costs, has not yet been conducted. Here, we describe the economic analysis of the first international, cross-sectional FOP burden of illness online survey (NCT04665323), created in collaboration with FOP community advisors, designed to investigate the economic impact of FOP on patients and their families.
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