2023 Family Gathering

On November 16-18 the global FOP community came together for our first-ever hybrid Family Gathering which took place in-person in Dallas, Texas, and online. The IFOPA is grateful to have the opportunity to come together with community members from around the world who share their support, knowledge, and insight in the spirit of community collaboration! This year we saw just over 400 people register from 35 countries around the globe. Thank you to everyone who joined in and contributed to making this event so special! 

View the Family Gathering photo gallery

Watch the 2023 Family Gathering Highlights Video

General session recordings for the majority* of presentations are now available on the IFOPA's Family Gathering YouTube channel. This form of access may be especially useful for:

  • Sharing presentations with local healthcare providers or family members who did not register for the event
  • Accessing translations as the live event translation services have ended. For translated subtitles of the recordings, follow these instructions. Please note that the subtitles provided are auto-translated. The translations are not professionally translated and may include some inaccuracies in names and meaning.

* Some general session presentations are not available due to permission from presenters.

Watch the Recorded Sessions

The 2023 FOP Family Gathering started with an introduction to the IFOPA and an overview of its services and programs.

Dr. Ed Hsiao of the University of California - San Francisco begins our presentations on Day 2 with an overview of 2023 advances in research in FOP and an update on Palovarotene in FOP.

This highly anticipated session brings together the perspective of FOP medical experts from across the US with a guest speaker from Mexico this year! Drs. Al Mukaddam, Pignolo and Hidalgo-Bravo shared important updates on FOP care management before answering questions from the community. Topics include FOP Do's and Don'ts, Insights from a Quality of Life Survey in the FOP community and Bone Health in FOP.

Clinical Trials for the FOP Community

This session provides an overview of clinical trial opportunities for the global FOP community delivered by Dr. Richard Keen, principal investigator for all active trials. Dr. Keen was joined by representatives from all four clinical trials for Q&A.

Symptom Management Strategies for FOP

This session aims to empower individuals living with FOP, their caregivers, local healthcare providers, and FOP experts with timely information regarding off-label medications to treat symptoms of FOP.

FOP and Nutrition

FOP mom, Marie H. Fahlberg shares her professional expertise in the field of nutrition and lifestyle-related health combined with her 25 years of experience as a mother of a son with FOP. A PDF resource from this session is available here.

Closing Session: FOP Community Perspectives

This panel discussion features the unique perspectives of four families from the FOP community who share their experiences and insights about living life to the fullest with FOP.

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