Curious about the 2025 Family Gathering? Join our virtual info session!

Whether you’ve attended in the past or this would be your first time, this session is the perfect way to learn more and start planning to join us in Minneapolis, November 13-15, 2025.

Join FOP community members Suzanne Hollywood (mom to Joe), Alexis Popp (sister to AJ), and Kim Biro (mom to Trent) as they share highlights from this year’s exciting agenda:

✨ Moms’ and Dads’ Retreat

🌀 Lymphatic Drainage Workshop

🎈 The always-popular Fun Zone and Teen Zone!


Register now

Strike Out FOP Wiffleball Tournament

July 27, 2025
Time TBD
Farm View Fields, Pittsford, NY

Join us for the annual Strike Out FOP Wiffleball Tournament, a fun-filled day of community, competition, and raising awareness—all in honor of Maria Wray, who lives with FOP. First held in 2022, this beloved event brings people together to support the fight against fibrodysplasia ossificans progressiva (FOP) while enjoying America’s favorite backyard game.

Click here for registration, sponsorship opportunities, and raffle details

Stay updated and follow the fun on Instagram

Come out and help us #StrikeOutFOP—one swing at a time!

The FOP Bereaved Families Group is an opportunity for those who have lost a friend or loved one to FOP to come together virtually to support each other.

Join us on Zoom, Thursday, August 7, at 8 pm ET.

Sign up and submit any comments or suggestions in advance by emailing [email protected]

Due to the conversational nature of the meeting, participants must be able to speak and understand English.

22-24 August, 2025
Melbourne, Australia

We are excited to announce the FOP Australia Patient Conference. The conference will be held in person, with some sessions offered virtually. It will feature clinicians from Australia, along with Dr. Ed Hsiao (USA) who will be attending in person, as well as Drs. Fred Kaplan and Bob Pignolo (USA) who will be attending virtually. The program is currently under development. More details coming soon.

To register, email [email protected]

For more information, contact Brooke Scott at [email protected]

The FOP Family Gathering provides opportunities to meet others in the community and to have your questions answered by leading experts in the field.

Held every other year, this special event brings together families from across the U.S. to connect, learn, and grow—while making lasting memories.

The whole family is invited, and onsite childcare and kids’ activities will be provided.

Registration is currently open! Register by July 31 to receive a complimentary welcome goodie bag in your hotel room upon arrival.

To register and learn more, click here. 

This year’s agenda includes:

• Sessions on symptom management, adaptive tools, and health insurance advocacy

• Practical tools to advocate for yourself and manage your health

• Interactive workshops, small group discussions, and activities for all ages

• Plenty of time to relax and enjoy being with people who “get it”
  
  

Hear from 2024 Family Gathering attendees. 

Note: After 2025, Family Gathering will move to an every-other-year event.

For Healthcare Professionals

Join us in person at the 2025 FOP Family Gathering to observe real-time consultations between members of the International Clinical Council on FOP and families—an invaluable opportunity to deepen your understanding of FOP from both clinical and lived experience perspectives.

Reduced registration rates are available for HCPs and include meals throughout the weekend. Early registration by July 31 is appreciated.

Get more information and register here.

Can’t attend in person?
We’ll also be offering a livestream of the general sessions on November 14–15 from approximately 10 AM to 1 PM ET. Fill out the interest form to receive the viewing link when it’s available.

Complete the interest form here.