Rare Disease News

Knowing More About Noonan

Published July 9, 2014 by NORD

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Katie Thortenson of Chicago is a proud mother of two healthy sons: her eldest, Jake, is 6, and her youngest, Drew, is 2, but often mistaken to be younger. When …

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NORD Recommendations for Advancing Drug Discovery, Development, and Delivery

Published June 17, 2014 by NORD

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On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st …

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NORD Outlines Steps to Promote Innovative Drug Discovery, Development and Delivery for Americans with Rare Diseases

Published June 2, 2014 by NORD

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Advocacy

National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative “Call to Action” The National Organization for Rare Disorders (NORD) has submitted comments to the …

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NORD Board Member Testifies Before Energy & Commerce Health Subcommittee

Published May 22, 2014 by NORD

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Advocacy

Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday before the U.S. House Energy and Commerce Health Subcommittee on …

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Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill

Published March 24, 2014 by NORD

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NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this …

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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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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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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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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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