Rare Disease News

NORD IAMRARE HI Global Registry Launched

Published October 9, 2018 by NORD

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Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the …

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Five Years of Patient Registry Success: NORD’s IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement

Published October 3, 2018 by NORD

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Listen to recent comments from Janet Woodcock, Director CDER, FDA on NORD and the importance of natural history registries for rare disorders.

NORD Receives Grant from Anthem Foundation for Expansion of Rare Disease Database®

Published September 25, 2018 by NORD

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Washington, D.C., September 25, 2018 – The National Organization for Rare Disorders (NORD) announced today it is enhancing its Rare Disease Database which serves as a valuable source of information …

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NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire

Published September 11, 2018 by NORD

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Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten …

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2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Published August 29, 2018 by NORD

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Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of …

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Healthline and NORD Announce Recipients of 2018 Stronger Scholarships

Published August 15, 2018 by NORD

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Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the …

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NORD’s RareEDU® Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Published July 19, 2018 by NORD

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Watch the latest release from NORD’s RareEDU™ on gene therapy.

NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Published May 29, 2018 by NORD

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Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world …

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New Research Funding Opportunities Available from NORD

Published May 24, 2018 by NORD

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All U.S. and international researchers are encouraged to apply by the initial application deadline of July 16, 2018

Neurology Reviews® and NORD Publish the 2018 Rare Neurological Disease Special Report

Published March 27, 2018 by NORD

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Parsippany – March 26, 2018 – The 2018 Rare Neurological Disease Special Report has been published by Neurology Reviews in collaboration with NORD, the National Organization for Rare Disorders, the leading independent nonprofit representing …

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