Rare Disease News

NORD Calls Proposed Repeal of Orphan Drug Tax Credit “Anti-Patient and Anti-Public Health”

Published March 6, 2014 by NORD

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More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax …

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FDA Creates New Web-Based Educational Tool About the Agency

Published February 28, 2014 by NORD

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The Food and Drug Administration’s Office of Orphan Products Development (OOPD), in collaboration with the FDA Center for Drug Evaluation and Research (CDER), has launched a web-based educational tool for …

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Our Shared Vision for Rare Disease Day

Published February 21, 2014 by NORD

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As Rare Disease Day arrives in time zones around the world, you’ll be able to track its progress on a map on RareDiseaseDay.org hosted by EURORDIS and RareDiseaseDay.US hosted by …

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BioNJ Presents Patient Advocate Award to NORD

Published February 18, 2014 by NORD

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NORD was one of four recipients of the first-ever “Patient Advocate Awards” of BioNJ, which represents more than 300 life sciences companies in New Jersey.

Building on Policy Momentum

Published February 3, 2014 by NORD

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The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research …

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Statement on Congressman Waxman’s Retirement

Published January 30, 2014 by NORD

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The announcement by Congressman Henry A. Waxman that he will not seek re-election after this term has reminded all of us at NORD — and throughout the rare disease community …

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Genzyme and NORD Establish Program to Help Undiagnosed Patients with Rare Diseases

Published December 16, 2013 by NORD

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CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for …

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Staying Focused on What Really Matters About the ACA

Published November 4, 2013 by NORD

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Despite the current focus on logistical problems associated with the rollout of the Affordable Care Act, we must not forget that this law includes some important insurance reforms that were …

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30 Years After the Orphan Drug Act: It Still Takes Too Long for People with Rare Diseases to Get an Accurate Diagnosis

Published October 23, 2013 by NORD

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NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis? We were stunned at …

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Even “Well Known” Rare Diseases Pose Diagnosis Problems

Published September 4, 2013 by NORD

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Even though Gaucher disease is one of the better known rare diseases and diagnostic testing is available, some patients still go for 10 years or longer without getting an accurate …

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