Rare Disease News

NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

Published September 19, 2017 by NORD

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The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the “Graham-Cassidy” plan to repeal …

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Over 140 Patient Organizations Support the Orphan Drug Tax Credit

Published September 14, 2017 by NORD

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Advocacy

Today, NORD joined over 140 patient organizations in sending a letter to Congress in support of the Orphan Drug Tax Credit (ODTC). We are extremely grateful to all those organizations …

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Downloadable Hurricane Harvey Emergency Relief Resources

Published August 31, 2017 by NORD

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Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be …

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NORD Issues Statement in Response to the Signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017

Published August 21, 2017 by NORD

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Washington, D.C., August 21, 2017—Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, …

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Advance the Dialogue at the NORD Rare Summit

Published August 15, 2017 by NORD

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Register now for the NORD Rare Summit to advance the dialogue on issues of unprecedented importance to the rare disease community.

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

Published August 3, 2017 by NORD

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Washington, D.C., August 3, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response …

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NORD Issues Statement on the Latest ACA Repeal and Replace Developments

Published July 28, 2017 by NORD

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Washington, D.C., July 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the …

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The BCRA and Healthcare Reform: NORD’s Latest Update

Published July 20, 2017 by NORD

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A note from Paul Melmeyer, NORD’s Director of Federal Policy, on where healthcare reform stands as of today and how to get involved. As part of our “Days of Action …

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NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit

Published July 20, 2017 by NORD

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Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote …

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NORD Issues Statement Regarding the Release of Revised Draft of the Better Care Reconciliation Act

Published July 13, 2017 by NORD

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Washington, D.C., July 13, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the …

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