*Please note, agenda sessions and topics are subject to change.

*In addition to the general sessions and workshops highlighted below the following ancillary activities will also take place during the event:

• Ability Toolbox (Adaptive Equipment and Home Modification) Display Room 
• Family Portrait Room
• Ask an Expert Meetings 
• Fun Zone and Teen Zone (to learn more about the Fun Zone and Teen Zone watch this clip from the 2023 Family Gathering recap video)

Thursday, November 13

10 am: Arrivals, Registration and Ability Toolbox Display Room Open

3 pm: First-time Attendee Welcome and Networking 

5 pm: Fun Zone Meet and Greet

7 pm: Welcome Dinner and Program

Friday, November 14

Morning Sessions (Livestreamed between approximately 10 am EST/3 pm GMT and 12 pm EST/6 pm GMT)

• FOP Experts Insights: Hear from FOP medical and dental experts as they present critical care management updates and come together for a roundtable discussion featuring questions submitted from in-person and livestream attendees.
  • Stay tuned for an updated list of this year’s FOP expert presenters!
• FOP Community Panel: Hear from community experts who share how different adaptive equipment, home modifications and advocacy have helped them live life to the fullest!

Lunch

Afternoon Retreats/Workshops (Only offered in person)

On our first full day together we’ll split into small groups based on personas. Prior to the arriving at the Family Gathering registered attendees will receive an email, text and Zoom meet-up invitation to share topics they value most in discussion. Group moderators will be equipped with resources to share during these guided discussion groups and workshops. 

• Mini Moms Retreat
• Mini Dad’s Retreat
• Adult Women with FOP Intensive Workshop
• Adult Men with FOP Intensive Workshop
• FOP Adolescents Retreat

Dinner and Evening Entertainment

Saturday, November 15

Morning Sessions (Livestreamed between approximately 10 am EST/3 pm GMT and 12 pm EST/6 pm GMT)

• Spinal and Chest Wall Challenges in FOP: Expert Medical and Surgical Insights
• Community Learnings and Identified Needs: Learnings from the Health Literacy and Access Survey

Lunch

Afternoon Workshop Stations (Only offered in person)

During our second day of small group connection and learning, we’ll be offering a variety of workshops for families to choose from. Preliminary Workshops include but will not be limited to:

Workshop Round 1

• Networking for Success: Building Your Circle of Support

  • Living with FOP is a journey no one should take alone. In this supportive and interactive 30-minute session, we’ll explore how to build and strengthen your personal network—one that empowers, uplifts, and sourounds you through all aspects of life.

    Learn who to include on your team—from medical professionals and educators to friends, family, and advocacy groups—and how each person can play a unique role in your life. We’ll share practical tips for reaching out, maintaining strong connections, and finding the right resources at the right time.

    Whether you're newly diagnosed or looking to expand your support system, this session offers encouragement, guidance, and community for every stage of the journey.

• Drug Discovery Showdown: Test Your Knowledge

  • Think you know how treatments make their way to our community? Step into the spotlight for a fast-paced, family-friendly Game Show Challenge that puts your knowledge of the drug development process to the test! In this fun and interactive 30-minute workshop, individuals and families will compete in teams through trivia rounds, lightning questions, and mini-challenges—just like a game show!

    From early-stage research to clinical trials and FDA approval, you'll uncover surprising facts, bust myths, and learn how a simple idea turns into an impactful treatment. No prior science knowledge needed—just your curiosity and team spirit!

    Perfect for all attendees 12 years old and up, this workshop makes learning about medicine development exciting, accessible, and unforgettable.

Workshop Round 2

• FOP at all Ages: Join one of 3 concurrent workshops 
  • School-aged Support for Life with FOP
  • Embracing Young Adulthood with FOP
  • Transitions in Care: Navigating Needs as an Adult with FOP

Closing Dinner and Goodbyes