New Web Resources for Patients and Families

As our community continues to grow, so too does our library of resources and our ability to help you. The Patients & Families web pages on the IFOPA website serve as the gateway to many of our programs that offer targeted support, educational materials and actionable steps to better understand and manage FOP.

It’s one of the most effective ways we can connect with and support our global community, and we’re thrilled to share recent updates we’ve made. In addition to a little facelift and reorganization, we’ve also added new material. Already a helpful tool, these changes should make it even easier to find information and connect with others more quickly.

Building on a great foundation, we’re pleased to offer three new focus areas filled with fresh content. The new Managing Your Healthcare section houses existing resources like the FOP Treatment Guidelines and Support Guidebooks, as well as new information like how to prepare for a medical emergency, tips for managing your healthcare using your smartphone, and more.

For people living with a rare disease like FOP, it makes such a difference to find others to relax and be yourself with. That’s why we’re so excited about the Connecting with FOP Community section that includes our new Community Social Event series. Focused on fun and connection, we hope you’ll join us for our last live virtual event of the year: the Share Your Strength Talent Show at the Virtual FOP Family Gathering on November 20. There's no skit too simple or group too big. Sing a song or work with a group of friends to share a your unique knowledge or skill. Learn more and sign up!

Finally, the reality is life with FOP is unpredictable. The new Resources for Support section is designed to help you wherever you are on your journey. Organized by life stages, it includes age-specific resources for managing FOP, including a new page offering step-by-step guidance for those families facing a recent FOP diagnosis.

In everything it does, our Family Services committee and staff are committed to ensuring those living with or caring for someone living with FOP feel the support of our entire community. We are grateful to everyone who has contributed to our work over the years. It is because of this collective effort that our resource offerings continue to expand and evolve. We hope recent updates to the Patients & Families web pages make it even easier for you to find what you’re looking for on your journey.

We’re eager to hear what you think! Please, share your comments, feedback and suggestions on the new design by emailing Family Services Manager Hope Newport at [email protected].

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