Don’t miss the virtual celebration of Rare Disease Day at NIH on Monday, March 1, from 10:30 am to 5:30 pm EST. Goals include raising awareness about rare diseases, the people they affect, and NIH research collaborations underway to address scientific challenges and advance new treatments.
The Rare Diseases Clinical Research Network (RDCRN) is pleased to announce the 2021 leadership slate for its Network Steering Committee, which oversees governance and decision making for trans-network policies and procedures.
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.
Eileen King, PhD, FASA, co-principal investigator with the Rare Diseases Clinical Research Network’s Data Management and Coordinating Center (DMCC), highlights the role of the DMCC and initiatives underway to help RDCRN participants “get to work” on speeding diagnoses and developing new treatments for people with rare diseases.
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.
Get to know 2020 NCATS Rare Diseases Are Not Rare! Challenge winner Jacob Thompson, an inspirational speaker, spoken word poet, and hip-hop artist. Thompson’s entry, “Keep on Fighting,” is a spoken word performance to encourage those who are challenged, whether with rare disease or in general, and to raise awareness for rare diseases.
Get to know 2020 NCATS Rare Diseases Are Not Rare! Challenge awardee Ramona Behshad, MD, an assistant professor in dermatology at Saint Louis University School of Medicine. Behshad’s entry, "Rare Disease Photo Challenge,” is a social media campaign to help raise awareness about rare diseases.