Calendar of Events

  • Peer Support Group for Adults with FOP

    Tuesday, June 13, 2023 at 12:00 PM Eastern Time (US & Canada)

    The IFOPA offers a peer support group for English-speaking adults with FOP.

    The group is an opportunity for members of the community to meet monthly for a one-hour session which will be moderated by counseling psychologist Al Freedman, dad of a son who lived for 26 years with another rare disease.

    The group will provide opportunities for connection between community members by creating a safe space for socializing and sharing challenges related to life with FOP. The group moderator will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.

    Learn more and register to take part

  • 9th Annual Midnight Sun Color Run

    Saturday, July 22, 2023 at 03:00 PM Alaska

    The Annual Midnight Sun Color Run, the funnest 5K above the Arctic Circle, will be held in honor of Dilyn Martin for 9th time on Saturday, July 22.
    All proceeds support FOP research. For more information, visit or contact Lucy Mae McConnell at [email protected]

  • Annual 5k in Honor of Mia Frears

    Sunday, July 23, 2023 at 09:00 AM Eastern Time (US & Canada)

    The annual 5k in honor of Mia Frears will take place on July 23 at Niawanda Band Shell, 200 Niagara Street in Tonawanda, NY. The event is 9 am - 12 pm and includes a 5k walk / run, a 50 / 50 raffle and a silent auction. Everyone registered will receive a blue and green tie-died t-shirt with 2023 #CURE FOP on it.

    For more information, contact Dawn at [email protected]

  • Massacre on the Mullica Golf Tournament

    Saturday, July 29, 2023 at 06:30 AM Eastern Time (US & Canada)
    Frog Rock Golf and Country Club in Hammonton, NJ

    Massacre on the Mullica Golf Tournament

    Frog Rock Golf and Country Club in Hammonton, NJ (event is in honor of Krys Mauz)
    Breakfast/registration starts at 6:30 AM and shotgun start at 8 AM

    For more information on signing up as a player or foursome, or for questions about sponsoring, contact Craig Zincavage at [email protected]

  • 2023 FOP Family Gathering

    Thursday, November 16, 2023 at 09:00 AM through November 19, 2023 Central Time (US & Canada)
    Dallas, Texas, USA

    Join us for the 2023 Family Gathering where we'll be celebrating the theme "Better Together."

    After three years of virtual meetings, we look forward to focusing on all the ways our community is more resilient, empowered and knowledgeable because of the support we all share with one another. We continue to work towards our mission of serving the global FOP community and those who are unable to travel by offering a virtual participation option. We plan to provide professional translation support in Spanish and artificial intelligence translation in 21 languages for all virtual event attendees during general sessions and some community social events.

    Stay up-to-date on the latest Family Gathering news:

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