Rare Disease News

Rare Disease Advocates Share Ideas for How to Mark Rare Disease Day 2019

Published January 8, 2019 by NORD

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Each year on the last day of February, the rare disease community comes together on Rare Disease Day to raise awareness for millions of people who are impacted by rare …

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NORD Issues Statement on FDA’s Impending Expanded Access Call Center

Published December 20, 2018 by NORD

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Advocacy

Washington, D.C., December 20, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on …

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Rare Disease Day 2019 is Only 10 Weeks Away!

Published December 20, 2018 by NORD

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Let’s get started! 10 weeks to go until Rare Disease Day! Share your plans!

Year-End Message from NORD’s President and CEO

Published December 13, 2018 by NORD

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For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to …

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Orphan Drug Act Resolution Introduced in Congress

Published November 19, 2018 by NORD

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Download NORD’s new fact sheet on the Orphan Drug Act.

Featured Student: Jennifer Shoskes

Published November 9, 2018 by NORD

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NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD …

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Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs

Published October 11, 2018 by NORD

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NORD’s Director of State Policy Tim Boyd participated in a press briefing on copay accumulators yesterday, which was followed by the issuance of the following press release that includes links …

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Chat, Chew, and Be Challenged! Lunchtime Learning at the NORD Rare Summit

Published September 20, 2018 by NORD

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Make your choice from this menu of thought-provoking, informative Lunch & Learn sessions available for attendees of the 2018 NORD Rare Summit. With only 25 days to go, be sure …

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Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Published September 12, 2018 by NORD

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1. Raves About the Rare Summit “Inspiring and Informative. Brought me to the realization that though I may feel my ‘disease’ is the only one – there are many who …

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2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Published August 29, 2018 by NORD

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Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of …

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