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  • Our Research
    • Find Diseases We Study
    • Rare Diseases Research Groups & Studies
    • Publications
  • For Patients
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    • Resources for Patients and Families
  • For Researchers
    • RDCRN Conference on Clinical Research for Rare Diseases (CCRRD)
      • Resources From Past CCRRD Conferences
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COVID-19

Maurizio Macaluso, MD, DrPH, FACE
Preliminary Survey Results Highlight Impact of COVID-19 on Rare Disease Community
February 10, 2021

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.

COVID-19
Photo courtesy of the CDC | Alissa Eckert, MS; Dan Higgins, MAMS
RDCRN Partnering with NIAID on Serosurvey of People Living with Rare Diseases
February 08, 2021

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. 

COVID-19
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.
Research Survey for Rare Disease Patients and Their Families About Impacts of COVID-19
May 08, 2020

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.

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The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). The RDCRN websites are hosted by the network’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under grant number TR002818.