Rare Disease News

NORD Signs Letter with Center for Responsible Science Calling for Changes at the FDA

Published August 5, 2015 by NORD

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Advocacy

NORD joined a coalition of nonprofit advocacy organizations, technology developers and patient interest groups, led by the Center for Responsible Science (CRS), in calling for the FDA to update regulations that …

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Rare Action™ Road Tour, Denver, CO

Published August 3, 2015 by NORD

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Greetings from Denver, As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10 hours and 632 …

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Taking Rare Action™ on the Road

Published August 3, 2015 by NORD

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Follow the cross-country road tour that introduces the NORD State Ambassadors and promotes the Rare Action Network™.

NORD Files Amicus Brief to Protect Drug Development Incentives in the Orphan Drug Act

Published July 30, 2015 by NORD

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Advocacy

Washington, D.C., July 30, 2015 – The National Organization for Rare Disorders (NORD) has filed an amicus brief in the D.C. Circuit of the U.S. Court of Appeals, stating that a …

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Rare Action™ Road Tour, Oklahoma City, OK

Published July 30, 2015 by NORD

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Greetings from Oklahoma, The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, …

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Miss Iron County Supports Rare Disease Advocacy and Awareness

Published July 29, 2015 by NORD

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Miss Iron County explains how she supports rare disease advocacy and awareness during a Miss Utah competition.

Rare Action™ Road Tour, Houston, TX

Published July 28, 2015 by NORD

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Howdy from Houston, The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, “hey, lets just take some byways …

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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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