The International FOP Association (IFOPA) offers global support to FOP families by creating strong networks that transcend borders. From its roots in the United States, IFOPA has grown into a lifeline for families in over 60 countries, offering hope, education, and vital resources for those affected by Fibrodysplasia Ossificans Progressiva (FOP).
IFOPA’s role in this network is vital. It serves as the bridge between patients, medical experts, and researchers across continents. Through its International President’s Council and translated resources, IFOPA ensures that families worldwide can access the same quality information, regardless of their language or location.
Its initiatives include the FOP Registry, which collects global patient data to help researchers identify patterns and improve treatments. IFOPA also provides emergency medical guidelines, wellness webinars, and peer-support groups to empower caregivers and patients alike.
Whether you live in India, Argentina, Germany, or Kenya, IFOPA global support ensures that no patient feels isolated. For example, IFOPA’s multilingual webinars and global FOP Registry help unify data and dialogue across regions. Families can also join global online forums and connect via international Zoom sessions held throughout the year. These features are all available through the IFOPA website at ifopa.org.
