Rare Disease News

NORD Issues Statement on California v. Texas Ruling

Published June 17, 2021 by NORD

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Washington, DC, June 17, 2021—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD) regarding today’s US Supreme Court decision …

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Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Published June 11, 2021 by NORD

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Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before …

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New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey

Published April 29, 2021 by NORD

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The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is …

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Jason and Nola’s Story in Honor of Rare Disease Day

Published February 26, 2021 by NORD

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I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect …

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NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Published February 25, 2021 by NORD

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The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare …

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National Attention for Rare Disease Day Airs on Lifetime Television

Published February 24, 2021 by NORD

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This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. …

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NORD Announces This Year’s Heroes of Rare Disease: The 2021 Rare Impact Award Honorees

Published February 23, 2021 by NORD

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Washington, DC, February 23, 2021 — Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be …

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Head of the Herd: Chandra Clark, VHL Alliance

Published February 19, 2021 by NORD

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At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space. Prior to …

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NORD Supports California Attorney General Xavier Becerra’s Nomination as Next Secretary of Department of Health and Human Services (HHS)

Published February 18, 2021 by NORD

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The National Organization for Rare Disorders (NORD®) is pleased to support California Attorney General Xavier Becerra’s nomination as the next Secretary of the Department of Health and Human Services (HHS). …

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NORD and Other Patient Advocacy Groups Issue Letter on Lack of Clear COVID-19 Vaccination Prioritization Guidance to the States for Rare Disease Patients

Published February 17, 2021 by NORD

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On February 17th, NORD, along with The ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation, sent a letter to Centers for Disease Control and Prevention (CDC) Director Walensky and …

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