News
Accelerating Access to Information for the Rare Disease Community
December 2, 2025
If you’re living with a rare disease — or caring for someone who is —...
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Answer the Call to Help Build a Healthier Future
December 2, 2025
We’re all human, but we’re not all the same. Often, our differences — like age,...
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Find Your Herd Through Running for Rare This Global Running Day
December 2, 2025
Living with a rare disease means that Amanda is one of 30 million-plus “zebras” in...
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In Memory of Kate O’Bara: Raising Awareness for Vascular EDS
December 2, 2025
By Laura O’Bara for Ehlers-Danlos Syndrome Awareness Month When you asked me to tell you...
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FDA CBER Director Dr. Vinay Prasad to Keynote NORD’s Inaugural Rare Disease Scientific Symposium, Convening Top Researchers, Industry Leaders, and Federal Regulators
December 2, 2025
WASHINGTON, May 23, 2025 --The National Organization for Rare Disorders (NORD®) will convene leading voices...
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In Honor of Eddie — A Story of Courage, Love, and an Unbreakable Bond
December 2, 2025
For MPS Awareness Day, May 15 By Debra Bell, mother of Eddie James Bell Jr....
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Montana Establishes Rare Disease Advisory Council to Support Residents Living with Rare Conditions
December 2, 2025
NORD’s advocacy helps Montana become 32nd state to create a dedicated council HELENA, MONT., May 14,...
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Arizona Becomes the 31st State With a Rare Disease Advisory Council
December 2, 2025
New State Council Will Help Shape Health Policies for Arizonans Living with Rare Diseases PHOENIX,...
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