Rare Disease Day 2025
There are so may ways to get involved in Rare Disease Day 2025! 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 2026!
Who knows? We may just add your event to our guide for 2026!
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We are so excited to invite members of the healthcare community and rare disease families to a private advanced screening of The Zebra and the Bear, a documentary film by Patrick O'Connor. We hope you will join us at the John K. Lloyd Ampitheater at the HOPE Tower from 1:30-4:00pm on Rare Disease Day (February 28th). Register here today and we hope to see you there! |
Watch This Video From The Rare Disease Day 2024 Fireside Chat!
We held our first ever Fireside Chat this past Rare Disease Day! 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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We had some of the top leaders in healthcare and policy there to discuss rare diseases and how we can make positive change for our rare kiddos and families. Leading experts, rare disease warriors and caregivers, and advocates all joining together for real change!
