2022 FOP Family Gathering

On October 8-9 the global FOP community came together for our third Virtual FOP Family Gathering. 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 with one another in the spirit of community collaboration! This year we saw just under 400 people register from 35 countries around the globe. Thank you to everyone who joined in and contributed to making this event so special!

If you registered and didn't get a chance to attend or would like to go back you and revisit the Gathering, you can log in at this link to:

  • Listen to a session again
  • Watch a session you missed
  • Further explore the Expo resources

General session recordings for the majority* of presentations are now available on the IFOPA's 2022 Virtual 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.

FOP Expert Insight

The Twilight Zone: Benefit, Risk & Hope in Clinical Trials for FOP: Dr. Fred Kaplan presented his annual research update where he discussed benefit, risk and hope in clinical trials for FOP.

Common Health Questions for FOP Medical Experts Panel 1: Drs. Fred Kaplan (US), Ed Hsiao (US), Zvi Grunwald (US) and Patricia Delai (Brazil) came together to share their insight on aspects of FOP care including COVID, complications of drug use on skin health and anesthesia before turning to the Q&A to answer questions about care.

Common Health Questions for FOP Medical Experts Panel 2Drs. Mona Al Mukaddam (US), Robert Pignolo (US), Vrisha Madhuri (India), Genevieve Baujat and Thomas Funck-Brentano (France) will came together to share their insight on topics including feminine health issues, kidney stones, atypical FOP toes and transitioning to adult care before turning to the Q&A to answer questions about care.

Research, Clinical Studies and Trials

FOP Clinical Trials & Studies Part 1: Representatives and researchers from the STOPFOP team and clinical trials sponsored by Ipsen Biopharmaceuticals and Regeneron Pharmaceuticals shared updates on their programs and research initiatives.

IFOPA Research and Registry UpdateHear the latest updates on IFOPA research support initiatives and how you can contribute to FOP research through those programs.

Care Management

FOP Oral Health Implications and Treatment ApproachesIt has been shown that 70% of FOP patients experience at some point a (very) limited maximum mouth opening (MMO) due to heterotopic ossification of the temporomandibular joint (TMJ) and surrounding structures of the maxillofacial region. The decrease in MMO has far-reaching consequences for the quality of life of FOP patients. Mouth opening in FOP patients can gradually decrease with serious consequences for eating, oral hygiene and dental treatment. Given the above, Ton Schoenmaker working at the ACTA Department of Experimental Periodontology, initiated a literature review on the causes and locations of heterotopic ossification in the maxillofacial region and the TMJ. The results of this review are recently published in "Frontiers in Medicine" and were presented in this session including proposed recommendations for the oral care of patients with FOP.

FOP and Caring for the Nose, Jaw and Throat: Four members of the FOP Care team in the Netherlands discussed the needs of FOP patients who are experiencing problems with pain when chewing, nosebleeds and swallowing complications. Learn how they work together to diagnose and treat issues related to the nose, jaw and throat related to bone formation.

Connecting for Care:How to Organize Support in the Complex World of FOP CareThe rarety of FOP and the large number of specialists involved in an individual's care can be difficult to manage. That's before adding the complexity of navigating health insurance to access optimal care. This session featured the insight of a complex care social worker who assists families with these issues every day, the experience of an FOP family working with a complex care department, and tips from a health literacy advocate who encourages people to become more empowered in discussion with their medical team.

Living Life with FOP

Living Well with FOP and the Ability Toolbox ProgramFOP community representatives Ambarin Khan and Kathleen Degenhardt and Family Services Coordinator Karen Kirchhoff, MSPT will discuss how you can use tools in a variety of ways to support continued independence, boost confidence and promote a balance for caregivers.

Pursuing College and a Career: FOP community member Laura Rossano shares her experience navigating college and her career path with FOP.

Contact Us

If you have any questions or issues please reach out to Family Services Manager, Hope Newport at [email protected] or by phone at +1 785 294 1607.


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