Organization Overview
Mission: The IFOPA is a 501(c)3 non-profit research foundation that supports and connects the global FOP community while driving research toward treatments and a cure. The IFOPA provides, patient support, patient advocacy and educational services for individuals with FOP and their families, worldwide.. The IFOPA provides research funding opportunities (ACT for FOP program) to support basic and translational research into FOP and its treatment. The IFOPA maintains a global registry of FOP patients that collects and reports demographics, disease and quality-of-life information (de-identified) directly from individuals with FOP for the research community. The IFOPA also maintains a tissue bank that collects biospecimens from FOP patients for research purposes.
