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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

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 … Continue reading "Guest Blog: One Mother’s Mission Turns Into a Global Movement for a Cure for MSD"...

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NORD Awards $65,000 in Grant Funding for Research into Two Rare Diseases, AVM and MMIHS, at NORD Rare Disease Centers of Excellence

Published May 21, 2024 by NORD

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May 21, 2024 — The National Organization for Rare Disorders (NORD), in partnership with the Tyler James Abizeid Foundation and the MMIHS Foundation, announces the awarding of two separate research …

Continue reading “NORD Awards $65,000 in Grant Funding for Research into Two Rare Diseases, AVM and MMIHS, at NORD Rare Disease Centers of Excellence”

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NORD Applauds Advancement of Critical Legislation Encouraging Rare Disease Drug Development and Improving Access to Care; Urges Continued Bipartisanship to Help People Living with Rare Diseases

Published May 16, 2024 by NORD

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WASHINGTON, D.C., May 16, 2024, Today, the House of Representatives’ Energy and Commerce Health Subcommittee voted to advance several bipartisan bills important to the rare disease community, two of which …

Continue reading “NORD Applauds Advancement of Critical Legislation Encouraging Rare Disease Drug Development and Improving Access to Care; Urges Continued Bipartisanship to Help People Living with Rare Diseases”

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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 …

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

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