Rare diseases affect an estimated 30 million people in the United States, or nearly 10% of the population. To better understand how individuals with rare diseases and their families are impacted by the COVID-19 pandemic, the NIH-funded Rare Diseases Clinical Research Network developed an online research survey. This survey will provide an opportunity for rare disease patients and caregivers to share their experiences and help researchers learn more about community needs during a time of crisis.
Rare Disease Patients and Caregivers
How are you being impacted by the novel coronavirus pandemic? Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Please complete the 20-minute online research survey from home to share your experiences. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.
To complete the survey or learn more, visit https://RareDiseasesNetwork.org/COVIDsurvey