The 2025 Family Gathering was one to remember!

Celebrating our 10th Family Gathering, we were thrilled to welcome 143 total attendees, including:

• 12 first-time families
• 19 returning families, and
• Representatives from 4 pharmaceutical companies—highlighting the tremendous growth in FOP research and industry engagement since the first event 10 years ago.

Thanks to the dedication and ideas of community members who contributed to planning over the past year, we expanded our event offerings, strengthened our programming, and created new spaces for connection and reflection. Click here to access photos from the event to relive the celebration!

Don’t forget to save the date for the 2027 Family Gathering, June 24–26 in Philadelphia!

Enriched Workshops and Small-Group Discussions

This year, our small-group workshops for moms, dads, adult men, adult women, and teens continued to grow—becoming more intentional spaces for guided discussion, shared resources, and genuine connection.

• Moms’ Songwriting Workshop
  Moms partnered with the musical trio Gin, Chocolate & Bottle Rockets to create an original song capturing the heart of the FOP community experience.
  🎵 Listen to the song the moms wrote
  
  
• Joint Workshop for Moms & Dads
  Parents came together for a powerful session led by Give an Hour, a national organization dedicated to transforming mental health through connected, resilient communities. This workshop also highlighted essential resources available to families affected by rare disease.
  
  
• Advocacy Sessions for Teens and Adults with FOP
  Two workshops—one for teens and one for adults living with FOP—were facilitated by Abbey Hauser of the EveryLife Foundation, who shared her own advocacy journey and explored practical tools, platforms, and trainings to help community members strengthen their voices and create meaningful impact.

General Session Highlights

This year's general sessions featured 14 expert speakers and perspectives from doctors and healthcare professionals shaping the future of FOP care, as well as elevated the voices of individuals with FOP and their caregivers who are guiding our community in navigating day-to-day life.

Key topics included:

• Gastrointestinal (GI) Symptoms, Dental and Dermatological Symptoms, Off-label medications, and Spinal and Chest Wall Challenges in FOP
  
  
• Key findings from the Health Insurance Literacy and Burden of Access Study
  
  
• Adaptive equipment, independence and the importance of support during transitions

You can find recordings of general session presentations on the IFOPA’s website, along with instructions for turning on and translating subtitles for non-English speakers.

Thank You for Making This Gathering Unforgettable!

The energy, compassion, curiosity, and courage our attendees and speakers brought to the Gathering made this year truly extraordinary. Whether you joined us in person or participated via livestream, your presence strengthened our community and helped turn hope into action.

We’re already thinking about how what we learned—and the new connections we made—will carry into the 2027 Family Gathering, June 24–26 in Philadelphia. We can’t wait to build on this momentum together.