Number 1: Guaranteed Connection

Many families we speak with share that the lack of understanding and isolation they experience in day-to-day life is one of the hardest aspects of living with FOP. We know how powerful human connection can be!

The Family Gathering is a once-a-year opportunity to see a large number of adults and children with FOP, caregivers, and family members in one place. Our small-group discussions provide designated time for all members of your support network to have meaningful conversations with those who truly get it.

Number 2: Expert Insight

The Family Gathering is THE BEST educational resource we will offer this year as it brings together the pillars of care and support in a variety of sessions and workshops throughout the weekend including:

• FOP expert insights
• Clinical trials
• Off-label treatments
• Dental care and FOP
• Advocating for your needs
• Adaptive tool and device integration 
• Lessons learned by individuals with FOP and their family (our personal favorite)

Number 3: Exposure to Research

Research is the future of FOP. What scientists are working on today will shape future care recommendations for our community.

The Family Gathering provides a rare opportunity for families to support researchers working in the FOP field directly through blood, urine, or saliva donations to the FOP Biobank. 

Number 4: Family-friendly Programming

At the FOP Family Gathering, there is something for everybody! Creating space for all members of the family to get involved is a driving factor of our planning. Attendees can enjoy targeted time to meet other who can relate to their experiences at the:

• First-time attendee orientation for newly diagnosed families or those who have never attended a Family Gathering
• Fun Zone (for youth attendees 0-12 years old)
• Teen Room (for youth attendees ages 13-18)

Number 5: Meet Your IFOPA

The IFOPA was founded by individuals with FOP and is guided by a Board of Directors made up of community members, staffed by a team of professionals, supported by the top medical and scientific advisors, and connected to a vast network of families working together to support each other.

At the FOP Family Gathering, you can meet all layers of the IFOPA network! Whether you are connecting with a member of our Board of Directors or speaking with medical advisors, leaders from the IFOPA will be ready to connect with you.

The Family Gathering also provides opportunities to meet with and hear from IFOPA staff on the latest program developments and resource offerings.