Patients and Families
Whether you or someone you love has been diagnosed with fibrodysplasia ossificans progressiva (FOP), we are here to provide support, education and resources to help you understand the disease better and improve your quality of life. Explore the pages below to learn more about living with FOP and get inspired by stories of courage and strength.
We encourage you to use explore this vast network of resources for:
- Connect with and learn from other members of the community in an Online Support Group.
- Read Guidebooks written for families dealing with FOP.
- Apply for a Quality of L.I.F.E. (Living Independently with Full Equality) Award, scholarships granted to patients with FOP. The program is designed to promote health, welfare and independence.
- Strengthen the mind and spirit as you work to overcome the challenges of living with FOP with the Resilient Living Program.
- Achieve independence through the use of tools and home adaptations with the Ability Toolbox Program.
- Meet and other FOP patients and health professionals who specialize in FOP research and care at Family Gatherings, meetings and symposia.
- Grow in your ability to speak up for your needs and access resources to help you effect change in day-to-day life through The Advocacy Series.
- Incorporate resources available for different ages and stages of life with FOP and explore the programs offered by the IFOPA.
- Access treatment guidelines and emergency medical information.
- Gain knowledge to confidently engage in clinical studies and trials and better understand the drug development process.
Action Through Research
- Register for the FOP Registry, a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. It is one of the greatest, most significant ways every patient can contribute to FOP research.
- Contribute to research and development by donating bio-samples to the IFOPA BioBank.