Family Study of Health Insurance Literacy and the Burden of Access in Fibrodysplasia Ossificans Progressiva (FOP)

Through this research we hope to gain a better understanding of the health insurance literacy of the FOP community and to understand the patient experience in terms of burden of access. Participants will complete a brief survey and a 1-hour interview to collect robust / representative data regarding payor profile, health insurance literacy and the burden of access that a FOP patient / caregiver may experience based on the severity of disease.
The aim of this study is to:
-Further define the burden of illness in families impacted by FOP and their healthcare providers, beyond the physical or functional burdens
-Inform the development of service offerings that could be provided by IFOPA, provide baseline data that identifies specific areas and impacts, which may lead to program offerings or changes
-Provide data that could some day be used as a baseline for legislative changes / insurance reform
-Provide data that could some day be used in the discussion of overall pricing and economic impact