NORD’s recently released COVID-19 Community Survey Report reveals the far-reaching impact the pandemic is having on rare patients and families. 772 participants responded to the survey conducted by NORD’s research team from April 1 through April 8, 2020. Respondents represent 49 of 50 states and Washington, DC, and multiple disease categories, including genetic conditions, primary immunodeficiencies, neurological, blood, metabolic, movement, eye, skin and other types of rare disorders.
The findings reflect a community directly affected and overwhelmingly concerned about the COVID-19 crisis. A follow-up survey is being planned to further monitor the experiences of patients and families as the pandemic continues. NORD is listening and will continue to channel the community’s collective voice into action, using information such as this survey data to help apprise policymakers on the challenges members of the rare community are facing and to shape our own programs and services.