Rare Disease News

NORD Launches Digital Education Initiative with PlatformQ Health

Published June 18, 2019 by NORD

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New program by the trusted voice and leader in the rare disease community aims to increase clinician preparedness and improve the care of patients living with rare diseases BOSTON, …

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NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States

Published May 7, 2019 by NORD

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NORD developed key drug pricing principles with the needs of the rare disease community in mind.

The 2019 Rare Neurological Disease Special Report Is Now Available

Published April 17, 2019 by NORD

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This 5th annual issue is the largest to date and focuses on the progress in medical science, genetics, and neuromuscular diseases Parsippany, NJ – April 16, 2019 – Frontline Medical Communications (FMC) …

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NORD Publishes Report on Primary Distal Renal Tubular Acidosis

Published April 16, 2019 by NORD

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NORD has published a report in its Rare Disease Database on primary distal renal tubular acidosis (dRTA), a rare genetic disorder that affects the ability of the kidneys to remove …

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NORD Publishes Report on Post-Transplant Lymphoproliferative Disease

Published November 29, 2018 by NORD

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Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on …

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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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NORD Seeks Proposals for CME Partnership

Published October 8, 2018 by NORD

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NORD has published a Request for Proposals inviting accredited CME providers to respond with proposals by Nov. 16th.

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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NORD’s RareEDU® Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Published July 19, 2018 by NORD

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Watch the latest release from NORD’s RareEDU™ on gene therapy.