News

FDA CBER Director Dr. Vinay Prasad to Keynote NORD’s Inaugural Rare Disease Scientific Symposium, Convening Top Researchers, Industry Leaders, and Federal Regulators
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
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
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
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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Honoring Nurses on International Nurses Day: The Bridge Between Rare Disease and Hope
Honoring Nurses on International Nurses Day: The Bridge Between Rare Disease and Hope

By Alicia Truelove, MSN, RN, CV-BC, NPD-BC International Nurses Day, May 12, is a time...

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#UndiagnosedLife: An Ode to My Wingman on My Diagnostic Odyssey
#UndiagnosedLife: An Ode to My Wingman on My Diagnostic Odyssey

By Christine McGarvey, NORD Rare Action Network Ambassador for Pennsylvania I have been on a...

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Christine as a child (left) with her mother (right)
#UndiagnosedLife: An Ode to My Wingman on My Diagnostic Odyssey

By Christine McGarvey, NORD Rare Action Network Ambassador for Pennsylvania I have been on a...

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Rare Faces of Medicaid: What’s at Stake for the Rare Community?
Rare Faces of Medicaid: What’s at Stake for the Rare Community?

Congress is currently considering potentially sweeping funding cuts to Medicaid, a program that provides life-saving...

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