Published 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 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 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 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 more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.