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
-
Access the Care for Sickle Cell Disease Pre-Summit WebinarThe 14th Annual Sickle Cell Disease Rese...
-
Community Congress Ad Hoc COVID-19 Response Working Group WebinarCommunity Congress Ad Hoc COVID-19 Respo...
-
MARAC Statement: Update About COVIDThe worldwide pandemic of COVID-19 (SARS...
-
Sister of Illinois’ first coronavirus victim also dies from virus. Quarantine prevents family from mourning togeth...At the urging of family members, Wanda B...
-
A Sickle Cell Warrior Soldiers Through the PandemicSome first-hand advice and information f...
-
COVID-19 Resources | Patient Advocate FoundationCareer Specific Relief Funds USBG Natio...
-
CDC Updates, Expands List of People at Risk of Severe COVID-19 IllnessOlder adults and people with underlying ...
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.