Rare Disease News

Rare Action™ Road Tour, Tallahassee, FL

Published July 28, 2015 by NORD

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Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules …

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Rare Action™ Road Tour, Atlanta, GA

Published July 23, 2015 by NORD

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Greetings from Atlanta, Georgia. I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force …

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Ensuring Access to Clinical Trials Act of 2015 Passes in the U.S. Senate

Published July 17, 2015 by NORD

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Advocacy

A win for the rare disease community Yesterday, the U.S. Senate passed the Ensuring Access to Clinical Trials Act of 2015 (S 139), which NORD has supported. The bill would make …

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NORD Issues Statement on House’s Approval of 21st Century Cures Initiative

Published July 10, 2015 by NORD

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Advocacy

Washington, D.C. – July 10, 2015 – The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s approval …

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Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Published June 17, 2015 by NORD

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Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” …

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NORD Submits Final Comments on 21st Century Cures Act

Published June 3, 2015 by NORD

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Advocacy

NORD has finalized its comments on 21st Century Cures Act. Read them here: NORD Comments on the 21st Century Cures Act.

Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Published May 28, 2015 by NORD

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Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, …

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NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

Published May 21, 2015 by NORD

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NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and …

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FDA Public Meeting on Chagas Disease Patient-Focused Drug Development

Published April 28, 2015 by NORD

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Advocacy

Paul Melmeyer, NORD’s Assistant Director of Public Policy, attended the FDA’s public meeting on Chagas Disease Patient-Focused Drug Development on April 28. Chagas is a rare parasitic disease (read NORD’s …

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The Will to Live and the Strength for a Cure

Published December 23, 2014 by NORD

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The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life