Published April 13, 2020 by NORD
With the availability of several promising gene therapies and more on the horizon, a recent survey published in Neurology Reviews’ 6th annual Rare Neurological Disease Special Report indicates that many potential prescribers are unaware of the life-changing …
Read morePublished April 3, 2020 by NORD
This week, the Fanconi Anemia Research Fund (FARF) and the National Organization for Rare Disorders (NORD) launched the largest-ever study to research Fanconi anemia (FA), a patient-driven natural history registry …
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 31, 2020 by NORD
During times of crisis we are once again reminded of how honored we are to fight for and alongside the rare disease community. Our rare herd is composed of remarkable …
Continue reading “NORD Releases 2019 Annual Report, “At the Heart of Progress in Rare Disease””
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 27, 2020 by NORD
The National Organization for Rare Disorders (NORD®) is excited to announce that a new peer-reviewed manuscript written by members of our research team has been published as a leading article …
Read morePublished March 24, 2020 by NORD
Washington, DC, March 24, 2020–The National Organization for Rare Disorders (NORD®) is pleased to welcome Prashant Goel as the new Vice President of Information Technology, based in the Danbury, CT …
Continue reading “NORD Welcomes Prashant Goel as Vice President of Information Technology”
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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