Published May 13, 2020 by NORD
NORD, KrabbeConnect and Partners for Krabbe Research invite you to register for an externally-led Patient-Focused Drug Development (EL-PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30-4:30pm ET. …
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 28, 2020 by NORD
“…As we pull into the hospital, she starts screaming that she doesn’t want to be there, and she wants to be home… No matter how much her doctors want to …
Read morePublished April 23, 2020 by NORD
The current COVID-19 pandemic necessitates a new approach to many aspects of life—particularly those that involve gathering together. The health and well-being of people living with rare diseases, their loved …
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 March 23, 2020 by NORD
Editor’s Note: The VHL Alliance’s Jeffersonian Dinner described below took place in early March. As we now practice social distancing in light of COVID-19, in-person events of this nature should …
Continue reading “NORD Member VHL Alliance Held Jeffersonian Dinner in Early March”
Read morePublished March 21, 2020 by NORD
#NORDinthenews NORD is featured as a rare disease resource and Dr. Marshall Summar, Chairman of NORD’s Board of Directors, is quoted extensively in an article published by US News and …
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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