DARE Fest 2022

Refsum Disease Awareness Week from June 11-19th


137 supporters

$35,000 goal

Team Member

Susan Kuranoff


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Team Members



7 supporters



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DARE Fest 2022

Saturday 8:00 AM - Sunday 11:59 PM EDT

Live Stream

Add to Calendar 2022-06-11 08:00:00 2022-06-19 23:59:00 America/New_York DARE Fest 2022 See the Event details below

Details to view the event are private and will be sent along with your ticket purchase.

See the Event details below


Created By

Global DARE Foundation

EIN: 84-3343395


Event Details

Global DARE Foundation will be hosting DARE Fest 2022 from June 11-19th. This event will be the first annual Refsum Awareness Week. During the week, we will be hosting a variety of exciting virtual events to educate, raise awareness, build community around the world and have some fun. The event will be for the entire Refsum Community including patients, caregivers, clinicians, dietitians, researchers and passionate supporters.

Virtual Online Festival June 11th-12th – Online event includes around the clock access to presentations, live Q&A sessions, recipe competition, breakout sessions, 1:1 networking and games. Access to the online festival activity will cost $29 and will include access to prizes.

DARE Fest 5K Activity (June 11th – June 19th) – a virtual 5K activity (run, walk, bike, swim, roll, etc.) that can take place anytime throughout the week either individually or as groups. Tickets for the 5K are $29 and will include access to prizes.

Combo & Special Donor Tickets: A discounted ticket will be available for $49 for those participating in both the 5K and the online festival. Special donor tickets are available for those wanting to support Global DARE Foundation's programs.

Early Bird Discount: If you register before May 21st, you will receive $5 off your registration by using this discount code: EarlyBirdSpecial

We have created special festival merchandise. Access the DARE Fest Store to purchase event t-shirts, hoodies, bags and mugs. Part of the proceeds will be provided to Global DARE Foundation.

DARE Fest Store

Global DARE Foundation's Mission

Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease.  DARE stands for Defeat Adult Refsum Everywhere. We DARE to believe there is a cure for Adult Refsum Disease.

Adult Refsum disease is a genetic disorder that impacts the metabolism of phytanic acid which is found in food.  The disease significantly impact quality of life of patients by causing vision loss, hearing loss, loss of smell, mobility issues and more.  People with Refsum Disease must also go on a very strict diet to slow progression of current symptoms and avoid life threatening symptoms.   A better therapy is needed!

Please help support this important initiative. Any amount will make a difference. Please contact us by email ([email protected]) if you have any questions.

Watch this short video to learn more about Refsum Disease and the work of Global DARE Foundation.


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$35,000 goal

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Global DARE Foundation

A 501(c)(3) organization

EIN 84-3343395