Preliminary Survey Results Highlight Impact of COVID-19 on Rare Disease Community Dakota Campbell Wed, 02/10/2021 - 15:57
Maurizio Macaluso, MD, DrPH, FACE

Maurizio Macaluso, MD, DrPH, FACE, co-principal investigator with the Rare Diseases Clinical Research Network’s Data Management and Coordinating Center, shares how a preliminary analysis of more than 3,400 responses to a recent survey of people living with rare diseases and their caregivers is shedding new light on their experiences during the novel coronavirus (COVID-19) pandemic.

RDCRN Partnering with NIAID on Serosurvey of People Living with Rare Diseases Dakota Campbell Mon, 02/08/2021 - 14:54
Photo courtesy of the CDC | Alissa Eckert, MS; Dan Higgins, MAMS

The Rare Diseases Clinical Research Network (RDCRN) will be collaborating with the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) and the University of Pittsburgh on a SARS-CoV-2 Pandemic Serosurvey among people who live with rare diseases. 

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.