Published June 11, 2020 by NORD
We are at a pivotal time in rare disease, one that requires new approaches and fresh perspectives in order to achieve real progress. Given the impact of the COVID-19 pandemic …
Read morePublished May 21, 2020 by NORD
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 …
Read morePublished May 12, 2020 by NORD
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 …
Read morePublished 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 …
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