Rare Disease News

COVID-19 Resources for Non-profit Leaders and the Community

Published March 20, 2020 by NORD

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The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are …

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NORD’s Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community

Published March 5, 2020 by NORD

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As information on the coronavirus, COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC).

NORD Launches Natural History Study for Undiagnosed Rare Diseases

Published February 28, 2020 by NORD

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Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease …

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NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

Published January 23, 2020 by NORD

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Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, …

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NORD Posts New Addition to Video Library – Pediatric Movement Disorders: Guidance for Parents & Physicians

Published October 11, 2019 by NORD

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NORD has created a short video to help parents, pediatricians and others recognize early signs of pediatric movement disorders and know what to do if they suspect a child may …

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Information on current NATPARA® shortage

Published October 10, 2019 by NORD

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On September 5, 2019, Takeda issued a recall of NATPARA® (parathyroid hormone), due to rubber particulates originating from the rubber septum of the NATPARA cartridge. As of October 9, NATPARA® …

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Amish Community Testimony

Published September 29, 2019 by NORD

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Read at Pyruvate Kinase Deficiency (PKD) Externally-Led Patient Focused Drug Development Meeting (PFDD) Meeting on Friday, September 20. Written By Debbie Drell, Director of Membership, NORD According to the NIH, …

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Students for Rare Featured Student: Jaime Tan

Published September 10, 2019 by NORD

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NORD’s Educational Initiatives team spoke with Jaime Tan, Central Michigan University medical student and NORD Students for Rare Chapter Leader. In this interview, Jaime talks about how he came to …

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New Video on PTLD Added to NORD Rare Disease Video Library

Published July 9, 2019 by NORD

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The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has added a new video to the NORD Rare …

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Registration Open for 2020 NORD Rare Summit

Published July 2, 2019 by NORD

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The time is now…register today!