Rare Disease News

Largest-Ever Study of SYNGAP1 (MRD5), Linked to Autism, was Launched

Published December 23, 2016 by NORD

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Research study is open to participants worldwide to advance understanding and treatments for rare disease causing non-syndromic intellectual disability ranging from mild to severe with attention deficits, impulsivity, and/or mood …

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President Signs 21st Century Cures Medical Innovation Bill Into Law

Published December 13, 2016 by NORD

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Today, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation. The bill includes many provisions that will improve the discovery, development, and delivery …

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State Report Card to Help People with Rare Diseases

Published December 13, 2016 by NORD

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Washington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new …

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Senate Passes Landmark 21st Century Cures Act

Published December 7, 2016 by NORD

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The President is expected to sign the bill into law later this week.

NORD Ready to Address New Challenges Based on Election Results

Published November 14, 2016 by NORD

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Washington, D.C., November 14, 2016—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the results of the recent …

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Fibrous Dysplasia Foundation and NORD Launch Cutting-Edge Study of Fibrous Dysplasia/McCune-Albright Syndrome

Published November 3, 2016 by NORD

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Washington, D.C., November 3, 2016—The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new …

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NORD Publishes Physician Guide to Cutaneous T-Cell Lymphoma

Published October 26, 2016 by NORD

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Washington, D.C., October 26, 2016—As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders has published The NORD Physician Guide to …

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Nominations Open for NORD’s 2017 Rare Impact Awards

Published October 14, 2016 by NORD

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Registration is open for the 2017 Rare Impact Awards.

Rare Diseases & Orphan Products Breakthrough Summit Speakers

Published October 5, 2016 by NORD

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Washington, D.C., October 5, 2016 – NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced the three keynote speakers for its 2016 Rare Diseases …

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A New Partnership that Helps Raise Awareness of Rare Diseases

Published September 30, 2016 by NORD

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NORD Now has A Growing Home Page on The Mighty and Will Appear on Many Stories on the Site.