Calendar of Events

  • 2021 Midnight Sun Color Run

    Saturday, July 31, 2021 at 12:00 AM through August 01, 2021 Alaska

    The FUNNEST 5K north of the Arctic Circle returns on Saturday, July 31 in Kotzebue AK.

    The 7th annual color run will raise funds for research in honor of Dilyn Martin and you're guaranteed to have a fun, colorful time as you run/walk through each of the 7 color stations throughout Kotzebue.

    Want to participate but don't live in Alaska? No problem! The event is both in-person and virtual this year so you can join the fun from wherever you live.

    Register via this link

  • Webinar | Discussing What Matters Most and Planning for End of Life Care

    Wednesday, August 11, 2021 at 01:00 PM Eastern Time (US & Canada)

    We can’t plan for everything, but we can talk about what is most important - in our health care, and in our life.

    Kate DeBartolo, Senior Director at the Conversations Project, is joining the IFOPA in this webinar to help everyone talk about their wishes for care through the end of life, so that those wishes can be understood and respected.

    Wednesday, August 11 at 1 pm EDT / 6 pm BST.
    Translation will be available in 18 languages.

    Learn more and register.

  • Global Genes RARE Patient Advocacy Summit

    Tuesday, September 28, 2021 at 06:00 PM through September 29, 2021 Eastern Time (US & Canada)

    This is not an IFOPA-sponsored event. 

    Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. More information at

  • American Society of Bone & Mineral Research Annual Meeting 2021

    Friday, October 01, 2021 at 12:00 PM through October 04, 2021 Eastern Time (US & Canada)

    Metro Toronto Convention Centre, Toronto, Ontario, Canada
    This is not an IFOPA-sponsored event. More information will be available later this year at
  • ZipperQ 2021

    Saturday, October 02, 2021 at 02:00 PM Central Time (US & Canada)
    Claremore Expo Center in Claremore, OK

    The 10th Annual ZipperQ is back in-person on Saturday, October 2 in Claremore, OK. This family-friendly event includes a BBQ competition and public tasting. Attendees also experience live music and kids games.

    ZipperQ supports the International FOP Association which funds research to find treatments and a cure for FOP, provides education and support programs for families living with FOP, raises awareness about FOP and advocates for those with FOP, their families and caregivers.

    Attendance is free and sponsorships are available. More information.

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