Rare Disease News

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.

Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

Published September 23, 2016 by NORD

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Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise …

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NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)

Published September 22, 2016 by NORD

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More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH Washington, D.C., September 22, 2016— The National Organization for Rare …

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FDA Commissioner Dr. Robert Califf to Speak at NORD Summit in October

Published June 30, 2016 by NORD

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The Commissioner of the U.S. Food and Drug Administration, Robert Califf, M.D., will speak at NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit in October. Commissioner Califf will provide …

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