A Rare Disease Day Update: RDCRN Survey on Impacts of COVID-19 sheila.wolfer@… Fri, 07/23/2021 - 13:48
A Rare Disease Day Update: RDCRN Survey on Impacts of COVID-19

Researchers from the Rare Diseases Clinical Research Network deliver an update on the survey of the impacts of COVID-19 of people living with rare diseases during Rare Disease Day at NIH, March 2021. Video features Marc E. Rothenberg, MD, PhD, Principal Investigator of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) and Thomas W. Ferkol, MD, Co-Principal Investigator of the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC).

Research Survey for Rare Disease Patients and Their Families About Impacts of COVID-19 Dakota Campbell Fri, 05/08/2020 - 10:43
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.