The International FOP Association (IFOPA) continues to be a vital hub for individuals and families living with Fibrodysplasia Ossificans Progressiva (FOP). As a worldwide nonprofit, its mission focuses on empowering patients through education, research, and direct support. This week, we spotlight how IFOPA builds bridges between continents and clinics to serve the FOP community better.
One of IFOPA’s standout features is the FOP Registry—a global tool collecting clinical and patient-reported data that aids in research and treatment development. In addition, IFOPA’s International President’s Council ensures that country-specific voices are heard and included in every effort.
Families from India, Brazil, South Africa, and beyond have found solidarity through IFOPA’s peer connect program, emergency medical guidelines, and caregiver resources. These tools, translated into multiple languages, are removing barriers and offering critical lifelines.
Thanks to IFOPA’s commitment, a child diagnosed in a remote village has the same access to information and resources as someone in a large urban hospital.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
