Rare Disease News

NORD Rare Action Network® 2018 State Report Card

Published March 20, 2018 by NORD

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The 2018 report has grown to cover several emerging issues. Download your copy today.

NORD to Collaborate with FDA on Pilot Patient Engagement Activity

Published February 28, 2018 by NORD

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Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the …

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NORD Launches 7,000 Mile Rare Movement

Published January 16, 2018 by NORD

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THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) LAUNCHES 7,000 MILE RARE MOVEMENT CHALLENGING AMERICANS TO CHART 7,000 MILES DURING MONTH OF FEBRUARY Americans to walk, bike or run 7,000 miles …

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NORD and the Orphan Drug Act Celebrate 35th Anniversaries

Published January 4, 2018 by NORD

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Press Releases

January 4th Marks 35 Years of Helping People with Rare Diseases and the Beginning of a New, Year-Long Education and Awareness Campaign This year marks the 35th anniversaries of both …

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Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

Published November 28, 2017 by NORD

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Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases Washington, D.C., November 28, 2017 – Today, the National Organization for …

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More Than 200 Patient Groups Call On Congress to Reinstate the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act

Published November 8, 2017 by NORD

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Show your support for the Orphan Drug Tax Credit!

NORD Releases New Documentary called “Good Morning Peyton”

Published October 26, 2017 by NORD

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View the full documentary. Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is …

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New Study Examines Use and Cost of Orphan Drugs

Published October 17, 2017 by NORD

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Press Releases

Orphan Drugs Account for Only 7.9% of Drug Spending in the U.S. Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, …

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Registration Open!

Published October 13, 2017 by NORD

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Registration is now open for the 35th Anniversary Celebration Presenting the Rare Impact Awards.

NORD Announces Three New Hires to Lead Research, Education and Business Development Programs

Published October 10, 2017 by NORD

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Danbury, CT, October 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization dedicated to helping the 30 million Americans with rare diseases, announces the appointment of …

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