May 08, 2020
An estimated 30 million people in the United States are affected by rare diseases. Complete an online survey from the NIH-funded Rare Diseases Clinical Research Network to help researchers understand the impacts of COVID-19 on the rare disease community.

Rare disease patients or their caregivers are invited to complete a 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting people with rare diseases and their families.

Impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health. It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases.

To complete the survey or learn more, visit the study page here. Questions? Email the study team at rd.covid19@cchmc.org.