Patients and Families
Being part of a rare disease community can be isolating at times, but you don't have to make this journey alone. The resources included below are a variety of ways to meet, interact and learn from the global FOP community.
- Join our Peer Support Group for English-speaking adults with FOP or our Caregiver Support Group for parents and significant others of individuals living with FOP.
- For those living outside of the U.S., finding an FOP international organization is the first step to connecting with support close to home.
- Read Stories of Living Well with FOP and get inspired by their examples of strength and courage.
- Also, check out Family Blogs and Websites within the FOP Community.
- Meet other patients in our Online Support Groups and tap into the vast resources within the community.
- Access the IFOPA's Zoom Resource to plan your own meeting and time to connect with other members of the community using an online video conferencing platform.
- Family Gatherings provide patients and families the chance to meet other FOP families and hear from experts in the FOP field. You'll also have the opportunity to hear the latest updates on FOP research initiatives and clinical trials and visit with leading FOP experts during medical and dental appointments.
- Sign up for the FOP Connection eNewsletter and community updates to get the latest news from the IFOPA and recent stories from families from the community.
- Meet, connect and enjoy the company of fellow members of the FOP community by participating in one of our monthly fun-focused Community Social Events.
