Rare Disease News

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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Statement by National Organization for Rare Disorders CEO, Pamela Gavin, on Congress’s Exclusion of Critical Rare Disease Bills in the Continuing Resolution

Published December 21, 2024 by NORD

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For the last several years, the National Organization for Rare Disorders (NORD) has had the privilege of working in close collaboration with Members of Congress from both sides of the …

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New California Law Establishes the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC)

Published September 30, 2024 by NORD

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Council will advise and advocate on the needs of California’s rare disease community SACRAMENTO, CA, SEPTEMBER 30, 2024 — California Governor Gavin Newsom signed into law AB 2613, legislation that …

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National Organization for Rare Disorders (NORD) Announces $85,000 in Grant Funding for Amyloidosis and Levy-Yeboa Syndrome

Published September 30, 2024 by NORD

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The National Organization for Rare Disorders (NORD) announced two new requests for proposal (RFP) for grant funding related to Amyloidosis and Levy-Yeboa Syndrome (LYS). NORD’s Rare Disease Research Grant Program, …

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