Published May 7, 2020 by NORD
NORD’s recently released COVID-19 Community Survey Report reveals the far-reaching impact the pandemic is having on rare patients and families. 772 participants responded to the survey conducted by NORD’s research team …
Read morePublished May 5, 2020 by NORD
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 …
Read morePublished April 24, 2020 by NORD
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 …
Continue reading “NORD Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging”
Read morePublished April 21, 2020 by NORD
The National Organization for Rare Disorders (NORD®) is excited to spotlight an article written by NORD’s Director of Research, Vanessa Boulanger, MSc, published in the 2020 Rare Neurological Disease Special …
Read morePublished April 20, 2020 by NORD
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 …
Continue reading “Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community”
Read morePublished April 16, 2020 by NORD
The results of a survey on gene therapy conducted by NORD and Frontline Medical Communications (FMC) among physicians and other healthcare professionals were recently announced. The responses indicated significant knowledge …
Read morePublished April 15, 2020 by NORD
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 …
Read morePublished April 2, 2020 by NORD
Parsipanny, NJ – Frontline Medical Communications (FMC) and the National Organization for Rare Disorders (NORD)® this week announced the release of the 6th annual Rare Neurological Disease Special Report. As …
Read morePublished March 30, 2020 by NORD
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 …
Read morePublished March 20, 2020 by NORD
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 …
Continue reading “COVID-19 Resources for Non-profit Leaders and the Community”
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