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Impact Features

Dynamic teams of physicians, researchers, patients, and patient advocates work together in each RDCRN consortium to advance rare diseases research. This page collects feature articles highlighting both the work of the RDCRN consortia and the people behind that work. Choose the consortium acronym at the top of the page to view features articles related to that consortium.

Click here for a complete list of all RDCRN consortia.

Keyword co-occurrence visualization map of RDCRN-supported publications 2004–2020.

January 29, 2024

The Rare Diseases Act of 2002 (H.R. 4013) enacted the establishment of the Rare Diseases Clinical Research Network (RDCRN) in 2003.

Congenital Disorders of Glycosylation Over Time: What We’re Learning from a Natural History Study

March 22, 2023

To learn more about the development and outcomes of congenital disorders of glycosylation (CDG), the Frontiers in Congenital Disorders of…

Andrea and her daughter, Bianca, celebrating World CDG Awareness Day

July 7, 2022

Andrea Miller, JD, MHA, is the founder and president of CDG CARE (Community Alliance and Resource Exchange), a patient advocacy group that supports…

The Franklin family at a playground, and Dee List wearing a graduation cap

June 30, 2022

Congenital disorders of glycosylation (CDG) are a large group of rare, inherited disorders that affect a complex process in the body called…

Kent Lai, PhD, sitting in a chair in his lab

June 21, 2022

Kent Lai, PhD, is a professor in the Division of Medical Genetics (Pediatrics) at the University of Utah. He is also a member of the Frontiers in…

Headshot of Steven Sloan, MD, PhD

June 14, 2022

Steven Sloan, MD, PhD, is an assistant professor in the Department of Human Genetics at the Emory University School of Medicine, as well as a member…