Skip to main content

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.

Image
Primary Ciliary Dyskinesia Over Time: What We’re Learning from Natural History Studies

March 25, 2024

Stephanie D. Davis, MD, and Thomas Ferkol, MD, share more about this study, while PCD family member Tori Eastvold shares what it’s like to…

Image
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.

Image
Headshot of Billy Anton

March 29, 2022

Billy Anton is a business professional and vice chair of the PCD Foundation Board of Directors. He is also diagnosed with primary ciliary dyskinesia…

Image
Headshot of BreAnna Kinghorn, MD, MS

March 22, 2022

BreAnna Kinghorn, MD, MS, is an assistant professor in pediatric pulmonary and sleep medicine at Seattle Children's Hospital and the University of…

Image
Genetic Disorders of Mucociliary Clearance Consortium logo

March 11, 2022

The Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) is a network of experts working together to better understand rare and genetic…