Upcoming Events/News
Events
As part of Global DARE Foundation's goals we try to attend and host as many events as possible to raise funs and awareness for our Refsum community. Take a look at what's coming up!
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Get Ready for Refsum Summer FEST 2025!
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Join the Global DARE Foundation from June 14–21 for a week full of fun, learning, inspiration, and a unique opportunity to make a difference for those living with Refsum disease — all online and in person! Here’s what’s coming your way:
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Kickoff Webinar with Kristie DeMarco & Susan Kuranoff
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Virtual 5K Challenge beginning on June 14th
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Science & Planning Update with Dianne Mitchell
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Fireside Chat with Kristie DeMarco & Sharon Burstin
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Inspirational Refsum Stories from our amazing community
Every dollar raised supports education, research, and outreach!
Register for Summer FEST 2025 today — Registration starts at just $35. Together, we can go farther. Let’s make this summer count.
Past Events:
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Join Kristie and John on Their Mission to Raise Awareness for Refsum Disease
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This spring, Kristie and John are embarking on an incredible journey across Thailand, Vietnam, Singapore, Malaysia, and Australia to raise awareness about Refsum disease. Along the way, they will connect with organizations, advocates, and individuals, building vital partnerships to further understanding and support for this rare condition.
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Follow their travels as they share insights, experiences, and impactful moments from their mission. Stay tuned for updates, stories, and photos from their journey!
Don’t miss this year’s Refsum Awareness Week from October 12 – 19th. It’s going to be the best awareness event yet!
Throughout the week we will be showcasing some of the most exciting new advancements in Refsum research through webinars on mental health tips for living with a chronic illness, and the latest clinical guidelines for the Refsum Diet.
We’re also proud to share the personal stories of some of our favorite Refsum champions.
Global DARE had a great time at the Foundation Fighting Blindness’s Visions 2024 Global Conference in Chicago, Illinois, from June 21st to the 22nd!
Global DARE was excited to attend ARVO's 2024 Meeting in Seattle, Washington May 5th through May 9th.
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ARVO is the largest gathering of Ophthalmologists in the world, and we were so excited to have our founder and president, Kristie DeMarco, in attendance!
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