2021 FOP Family Gathering

On November 19-21 the global FOP community came together for our second 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 over 500 people register from 43 countries around the globe. Thank you to everyone who joined in and contributed to make 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 Exhibit Hall resources

General session recordings for the majority* of presentations are now available on the IFOPA's 2021 Virtual Family Gathering YouTube channel. This form of access may be especially useful for:

  • Sharing presentations with local health care 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

When a Surgical Procedure is Your Only Option: Coordinating Expert Dental and Anesthesia Care: Drs. Clive Friedman (Canada), Zvi Grunwald (US and Israel), Chris Scott (South Africa) and Janieke Van Nugteren (South Africa) will come together to share their recent experience supporting a adult individual with FOP who recently underwent dental surgery in South Africa. This team of oral health, anesthesia, and medical experts from around the globe will share how they collaborated with a patient and local providers to provide optimal care. 

FOP Research

Patient and Family Involvement in the Drug Development and Approval Process: Laura Iliescu, Associate Director of Patient Advocacy Strategy joins the FOP community to talk about patient involvement in the clinical trial and drug approval process. She'll also be focusing on what to consider when deciding if and what clinical trial is right for you.

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

IFOPA Research Update and Participating in the FOP Registry: IFOPA Research Development & Partnerships Director, Danielle Kerkovich, PhD and IFOPA Executive Director Michelle Davis share about the variety of ways the IFOPA supports FOP research.

Supporting the Entire FOP Individual and Family

Living Well with FOP and the Ability Toolbox ProgramFOP community representatives Kristi Gonzales, Emma Albee and Laurent Gouy and Family Services Coordinator Karen Kirchhoff, MSPT discuss how you can use tools in a variety of ways to support continued independence, boost confidence and promote a balance for caregivers.

IFOPA Family Services Connecting and Supporting Families: IFOPA Family Service team Hope Newport, CCLS and Karen Kirchhoff MSPT share a glimpse into the many ways they connect with the FOP community to help provide and facilitate support for individuals with FOP and their support system throughout their FOP journey.

Questions about the Family Gathering?

If you have questions about the 2021 Virtual Family Gathering, please email Hope Newport, Family Services Manager, or call
+1 (785) 294-1607.


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