Rare Disease News

First Rare Disease Therapy Developed with a NORD IAMRARE Patient Registry Secures FDA Approval

Published June 5, 2025 by NORD

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QUINCY, Mass., June 5, 2025 – The National Organization for Rare Disorders (NORD®) proudly announces a major milestone: for the first time, patient data collected through the NORD IAMRARE® patient …

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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

Published May 23, 2025 by NORD

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WASHINGTON, May 23, 2025 –The National Organization for Rare Disorders (NORD®) will convene leading voices in science, industry, and regulation at its inaugural Rare Disease Scientific Symposium, a two-day conference …

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Arizona Becomes the 31st State With a Rare Disease Advisory Council

Published May 13, 2025 by NORD

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New State Council Will Help Shape Health Policies for Arizonans Living with Rare Diseases PHOENIX, May 13, 2025 — The National Organization for Rare Disorders (NORD®) celebrates a significant milestone …

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A Deeper Look at the New NORD Rare Disease Scientific Symposium

Published April 4, 2025 by NORD

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Fostering collaboration to drive progress in rare disease research By Tracey Sikora, Vice President of Research & Clinical Programs Rare disease research is full of obstacles — small patient populations, …

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National Organization for Rare Disorders (NORD) Launches NORD Claim Your Care

Published March 21, 2025 by NORD

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Danbury, CT, March 21, 2025 – The National Organization for Rare Disorders (NORD®) launched NORD® Claim Your Care to help those living with rare diseases navigate a complicated health insurance …

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Highlights from Rare Disease Day 2025

Published March 11, 2025 by NORD

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From parachuting zebras to “Wicked” stars and breaking news from the NORD® Rare Disease Centers of Excellence, we’re thrilled to share our favorite moments from Rare Disease Day 2025! …

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NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease

Published February 27, 2025 by NORD

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Paramount to match funds donated to NORD in support of new film Novocaine QUINCY, Mass., Feb. 27, 2025 — The National Organization for Rare Disorders (NORD®) is teaming up with Paramount Pictures …

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NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities

Published February 21, 2025 by NORD

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New Mental Health Video Series Launches February 24 The National Organization for Rare Disorders (NORD®) is excited to announce a new collaboration with Bionews, a digital health solutions company dedicated …

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Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28

Published February 19, 2025 by NORD

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Think of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 …

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NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy

Published February 14, 2025 by NORD

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There are several proposed policy changes occurring across government entities, many of which have the potential to impact the rare disease community. At the National Organization for Rare Disorders (NORD®), …

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Rare Disease News

First Rare Disease Therapy Developed with a NORD IAMRARE Patient Registry Secures FDA Approval

FDA CBER Director Dr. Vinay Prasad to Keynote NORD’s Inaugural Rare Disease Scientific Symposium, Convening Top Researchers, Industry Leaders, and Federal Regulators

Arizona Becomes the 31st State With a Rare Disease Advisory Council

A Deeper Look at the New NORD Rare Disease Scientific Symposium

National Organization for Rare Disorders (NORD) Launches NORD Claim Your Care

Highlights from Rare Disease Day 2025

NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease

NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities

Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28

NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy

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