Rare Disease News

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’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume

Published February 19, 2025 by NORD

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Expanded Medicaid/CHIP Continuous Eligibility for Children, Step Therapy Reforms, andOut-of-Pocket Prescription Cost Protections Among 2024 State Improvements Feb. 19, 2025, Washington, D.C. — The National Organization for Rare Disorders (NORD®) today issued …

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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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Tracey Sikora Joins the National Organization for Rare Disorders (NORD) as Vice President of Research and Clinical Programs

Published December 12, 2024 by NORD

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QUINCY, Mass. Dec. 12, 2024 — The National Organization for Rare Disorders (NORD®) has named Tracey Sikora, Vice President of Research & Clinical Programs. “One of the main hurdles in …

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Kelly Esperias Joins the National Organization for Rare Disorders (NORD) as Chief Strategy & Operations Officer

Published December 9, 2024 by NORD

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QUINCY, Mass., December 9, 2024 – The National Organization for Rare Disorders (NORD) has named Kelly Esperias, EdD, MBA, CFRE, Chief Strategy & Operations Officer. Esperias, who previously served as …

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National Organization for Rare Disorders (NORD) Launches the Living Rare Study – First to Measure Full Scope of Rare Disease Challenges

Published October 21, 2024 by NORD

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Data will be used to help improve policy, access, resources WASHINGTON, DC, October 21, 2024 – Today, the National Organization for Rare Disorders (NORD) introduced the Living Rare Study, a …

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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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NORD Launches First Canadian Patient Registries on Its IAMRARE Platform

Published May 10, 2024 by NORD

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The National Organization for Rare Disorders (NORD) announced the launch of two Canadian patient registries within its IAMRARE® Program, in partnership with the Children’s Hospital of Eastern Ontario (CHEO) Research …

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National Organization for Rare Disorders (NORD) Names Pamela K. Gavin as CEO; Peter L. Saltonstall Retires and Will Serve in Consultative Role

Published May 1, 2024 by NORD

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QUINCY, MA, May 1, 2024—The National Organization for Rare Disorders (NORD) announced today that Pamela K. Gavin has been named CEO effective immediately. She succeeds Peter L. Saltonstall who announces …

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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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