2024 Family Gathering in Denver, Colorado
On November 7-9, families from around the United States (and one family from Bangladesh!) came together in Denver, Colorado to celebrate the FOP community and our 2024 theme "Transformation: The Power of Change"
Click here to view photos of the event.
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.
Watch the Recorded Sessions
* Please note, The Power of 1 session listed on the agenda is not available due to permission from the presenter.
The 2024 FOP Family Gathering started with an introduction to the IFOPA by it's staff who discussed the evolution of the organization over the years during a roundtable discussion moderated by Chair of the IFOPA Board of Directors Rebecca Wallace.
This highly anticipated session brings together the perspective of FOP medical experts from across the US. Drs. Robert Pignolo (Mayo Clinic), Ellen Elias (Children's Hospital Colorado), Mona Al Mukaddam (University of Pennsylvania) and Ed Hsiao (University of California, San Francisco) shared important updates on FOP care management before they were joined by Dr. Fred Kaplan to answer questions from the community. Topics include:
- Therapeutic Horizons for FOP: Targets, Treatments and Challenge
- Managing Complex Care in Patients with FOP
- Bone (Normotopic) Health in FOP
- Off-Label Medications in FOP
Access a PDF of the slides from this session here.
Clinical Trials for the FOP Community
This session provides an overview of clinical trial updates for the global FOP community delivered by Dr. Ed Hsiao. Dr. Hsiao was joined by representatives from all five clinical trials for Q&A.
In this one-of-a-kind session, Dr. Fred Kaplan, lovingly known as "the father of FOP" shares how various families and individuals have played unique roles in our understanding of FOP and potential future treatments.
Navigating Transitions in the Journey with FOP
This panel discussion features the unique perspectives of five families from the FOP community who share their experiences and insights about navigating transitions in their journeys with FOP. Community panelists include: Tisa Caruso, Danie Coyne, Lisa Gillooly, Kristi Gonzales and Holly LaPrade.
We Are Grateful to Our Family Gathering Sponsors:
Visionary Partner
Regeneron is a leading biotechnology company that invents, develops and commercializes life-transforming medicines for serious diseases. Founded and led by physician-scientists, our unique ability to repeatedly translate science into medicine has led to numerous approved treatments and product candidates in development. Learn more at www.Regeneron.com.
Leadership Partner
Gathering Supporter
Friend of the Family Gathering
