Rare Disease News

NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

Published May 21, 2020 by NORD

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Washington, DC, May 21, 2020—The National Organization for Rare Disorders (NORD®) today launched the COVID-19 Rapid Response Leadership Series, a program providing resources to support rare disease nonprofit groups in …

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NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research

Published May 19, 2020 by NORD

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Washington, DC, May 19, 2020—The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational …

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In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program

Published May 12, 2020 by NORD

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Washington, DC, May 12, 2020— United with more than 25 million Americans living with rare diseases, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Premium & Medical …

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New Community Survey Findings from NORD Reveal Significant Impact of COVID-19 on Americans Living with Rare Diseases

Published May 5, 2020 by NORD

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Washington, DC, May 5, 2020–Today, the National Organization for Rare Disorders (NORD®) released the findings of its recent survey on the critical issues and concerns the rare disease community is facing …

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NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19

Published April 15, 2020 by NORD

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Washington, DC, April 15, 2020— At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the National Organization for Rare …

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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 Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Published February 11, 2020 by NORD

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Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations …

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NORD State of the States Report Shows Key Policy Improvements Were Achieved by States in 2019, But More Progress Is Needed to Support Americans Living with Rare Diseases

Published January 30, 2020 by NORD

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Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action …

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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 Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!

Published January 16, 2020 by NORD

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Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease …

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