Trusted Resources: Evidence & Education
Scientific literature and patient education texts
COVID-19 Community Survey Report – NORD Rare Insights
source: National Organization for Rare Disorders
summary/abstract:The novel coronavirus, and the disease that it causes, COVID-19, is causing significant challenges for millions of Americans living with rare diseases. People with underlying conditions are at risk of more severe illness from COVID-19, and rare disease patients, their caregivers and family members are seeing their lives disrupted in numerous other ways.
The National Organization for Rare Disorders conducted a community survey in early April to help understand and bring these issues to light and to support the development of resources that address concerns raised by respondents.
It is clear from the survey results that the community is overwhelmingly concerned and impacted by COVID-19; 98% are worried and of those, 67% are very or extremel worried. In addition, 95% have been impacted to some degree at a cost to their immediate and long-term health and well-being.
read more
Related Content
-
COVID-19 Resources – American Society of HematologyThe United States and countries around t...
-
MARAC Advisory Statement: COVID-19 VaccinesNews is evolving rapidly about COVID-19 ...
-
Sister of Illinois’ first coronavirus victim also dies from virus. Quarantine prevents family from mourning togeth...At the urging of family members, Wanda B...
-
NORD/EURORDIS-Rare Diseases Europe Joint Statement on COVID-19 and Orphan Drug LegislationThe National Organization for Rare Disor...
-
National Briefing with CDC: COVID-19 and the Chronic Disease CommunityApril 29th, 2020 from 2PM – 3PM EDT A...
-
Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research ExclusionThis registry is designed to capture ped...
-
You Should Get a COVID-19 Vaccine – Mandarinhttps://www.youtube.com/watch?v=6yPsDqxi...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.