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National Organization for Rare Disorders (NORD) Announces 2025 Industry Innovation and Rare Impact Award Honorees

National Organization for Rare Disorders (NORD) Announces 2025 Industry Innovation and Rare Impact Award Honorees

Published July 16, 2025 by NORD

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Annual Awards Celebrate Outstanding Contributions to Rare Disease Treatments, Advocacy, and Research QUINCY, Mass., July 16, 2025—The National Organization for Rare Disorders (NORD®) is honoring a distinguished group of industry … Continue reading "1 in 10 Californians with Rare Disease are One Step Closer to Having their Voices Heard in State Government; NORD Advocates Testify and Help the Rare Disease Advisory Council Bill Advance to Appropriations"...

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1 in 10 Californians with Rare Disease are One Step Closer to Having their Voices Heard in State Government; NORD Advocates Testify and Help the Rare Disease Advisory Council Bill Advance to Appropriations

Published April 24, 2024 by NORD

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SACRAMENTO, CA, April 24, 2024—Today, California is one step closer to establishing a Rare Disease Advisory Council (RDAC) to help the 1-in-10 Californians living with rare disease access critical care …

Continue reading “1 in 10 Californians with Rare Disease are One Step Closer to Having their Voices Heard in State Government; NORD Advocates Testify and Help the Rare Disease Advisory Council Bill Advance to Appropriations”

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NORD Announces 2024 Rare Impact Award Honorees, Emmy Award-Winning Journalist, Peter Alexander to Host

Published April 22, 2024 by NORD

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The National Organization for Rare Disorders (NORD) will honor a distinguished group of individuals and industry leaders for their contributions to help improve the lives of more than 30 million …

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Mississippi Enacts Critical Reform to Improve Access to Care for the 1 in 10 State Residents Living with a Rare Disease

Published April 16, 2024 by NORD

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Since NORD launched Project RDAC in 2020, Mississippi becomes the 28th state to establish an RDAC to better focus public policy efforts for people living with rare diseases. JACKSON, MS, …

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The Needs of Rare Disease Patients Cannot Be Forgotten in this Week’s Congressional Hearing on Lab Developed Diagnostic Tests (LDTs)

Published March 20, 2024 by NORD

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By Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) How should lab developed diagnostic tests (LDTs) be regulated? As the House Energy …

Continue reading “The Needs of Rare Disease Patients Cannot Be Forgotten in this Week’s Congressional Hearing on Lab Developed Diagnostic Tests (LDTs)”

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