News

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Accelerating Access to Information for the Rare Disease Community 

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 

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

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

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

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

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

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

New State Council Will Help Shape Health Policies for Arizonans Living with Rare Diseases PHOENIX,...

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