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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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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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NORD Launches Education Series to Advance Patient Involvement in Rare Disease Drug Development

Published October 16, 2023 by NORD

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Series available in English and Spanish – Created in partnership with the FDA and Critical Path Institute  Today, the National Organization for Rare Disorders (NORD) launched a new education series …

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