Rare Disease News

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 Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging

Published April 24, 2020 by NORD

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Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and …

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Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community

Published April 20, 2020 by NORD

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In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the …

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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 and EURORDIS-Rare Diseases Europe Issue Joint Statement on COVID-19 and Orphan Drug Legislation

Published March 30, 2020 by NORD

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The National Organization for Rare Disorders (NORD®) and EURORDIS-Rare Diseases Europe share the global concern that diagnostics, therapeutics and vaccines to address COVID-19 be developed expeditiously. NORD and EURORDIS represent …

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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).