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reference materials

COVID-19 Community Survey Report – NORD Rare Insights

key information

source: National Organization for Rare Disorders


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.


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