Rare Disease Day 2026
There are so may ways to get involved in Rare Disease Day 2026! We encourage you to get your family, friends, co-workers, and other communities and groups involved! Check out our guide and let us know if you have any questions -- and feel free to come up with other creative ways to raise awareness and funds for children battling rare diseases and chronic illnesses!
Who knows? We may just add your event to our guide for 2027!
Who knows? We may just add your event to our guide for 2027!
Join the 2026 Run H.A.R.D. for Rare Kids Event!
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Sign up for our 6th annual Run HARD for Rare Kids event today! The event will be held virtually from February 21st through the 28th (Rare Disease Day). Participants can sign up to run, walk or relax for rare! Options include 2 miles, 5k, 8 miles, and 28 miles (and 0 miles, if you are relaxing for rare) that can be completed all at once or over the span of the 8 days! You can create or join a team and help us to raise awareness and funds for children battling rare diseases and chronic illnesses! Feel free to share this flyer and sign up link with your friends, family, co-workers, or team! Use hashtags #RunHARDForRareKids and #RunHARD2026 so we can share your photos on our social media!
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Rare Disease Day 2025: The Zebra and the Bear
We had the absolute pleasure of hosting an advanced screening of The Zebra and the Bear, directed by Patrick O'Connor and telling the story of Amber Olsen and her daughter, Willow, who battled an ultra-rare disease. We thank Patrick and Amber for partnering with us for this amazing and important Rare Disease Day event to raise awareness and help others impacted by rare diseases to know they are never alone.
To read more and view the trailer, visit The Zebra and the Bear website.
To read more and view the trailer, visit The Zebra and the Bear website.
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Watch This Video From The Rare Disease Day 2024 Fireside Chat!
We held our first ever Fireside Chat for Rare Disease Day 2024! It was an amazing event with even more amazing panelists. Check out the video below to see the highlights! Thank you to everyone who attended and came together to make this day a huge success!
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Thank you to A3 Digital Media for capturing this for us!
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