Google
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
+myBinderRelated Content
-
Trauma, Quarantine, and Isolation – WebinarThe Sickle Cell Mental Health Initiative...
-
COVID-19 and Sickle Cell Disease and Access to Care WebinarThe 14th Annual Sickle Cell Disease Rese...
-
What People With Sickle Cell Disease Need to Know About COVID-19People with sickle cell disease are at i...
-
Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research ExclusionThis registry is designed to capture ped...
-
In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief ProgramUnited with more than 25 million America...
-
How to Prepare Your Family in Case COVID-19 Spreads in Your CommunityHere is what you can do to prepare your ...
-
Access the Care for Sickle Cell Disease Pre-Summit WebinarThe 14th Annual Sickle Cell Disease Rese...
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.
Powered by
Support for this site is provided by
This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.