Rare Disease Research Challenges, Opportunities Due to COVID-19 Featured in New Article
May 04, 2021

Challenges in conducting clinical research in the midst of the COVID-19 pandemic are spotlighted in an article from three consortia of the Rare Diseases Clinical Research Network (RDCRN). Their contribution was featured in the latest issue of Rare Neurological Diseases Special Report.

Heather Flanagan-Steet and Steven Sloan, 2021 Pilot Grant Winners
April 19, 2021

The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC), in close partnership with CDG CARE, has awarded 2021 pilot grants to Heather Flanagan-Steet, PhD and Steven Sloan MD, PhD.

DC Career Development and Pilot Projects
March 23, 2021

The Dystonia Coalition (DC) is seeking applications for its Career Development and Pilot Projects programs.

Rare Disease Day at NIH | March 1, 2021 | #RDDNIH
February 15, 2021

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.

2021 Network Steering Committee
February 11, 2021

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
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.

Eileen King, PhD, FASA
February 09, 2021

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.