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Statement by National Organization for Rare Disorders CEO, Pamela Gavin, on Congress’s Exclusion of Critical Rare Disease Bills in the Continuing Resolution

Published December 21, 2024 by NORD

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For the last several years, the National Organization for Rare Disorders (NORD) has had the privilege of working in close collaboration with Members of Congress from both sides of the … Continue reading "Trivia Can Save Lives: How a Jeopardy Question Raised Awareness of a Rare Disease"...

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News & Articles

Trivia Can Save Lives: How a Jeopardy Question Raised Awareness of a Rare Disease

Published March 20, 2014 by NORD

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I woke up this morning in a great mood. Something wonderful happened last night. Let’s see, what was it? Oh yeah, that Jeopardy question. Ugh. Then there was the …

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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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Adventures of an Advocate: Annette De Bow’s Big Journeys

Published March 4, 2014 by NORD

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Six months after her daughter Evan Claire was born in 2008, Annette De Bow, 48, of Davis, CA was diagnosed with polycythemia vera (PV), one of a closely related group …

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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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A CRISPR Approach to Genome Editing

Published December 4, 2013 by NORD

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Genome editing is a process that involves cutting out mutations in DNA and replacing them with new genetic material. This is an exciting idea because if it can be refined …

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