On May 7, 2020, the NIH announced a new online survey launched by the NIH-supported Rare Diseases Clinical Research Network (RDCRN) to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families and their caregivers. Results will help the rare disease research community shed light on the needs of people with rare diseases during the COVID-19 pandemic and other potential health crises, in addition to informing future research efforts.