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.

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.

Cerebral Cavernous Malformations Over Time: What We’re Learning from a Natural History Study

August 25, 2023


November 22, 2021

We are launching a new article series that offers a window into rare diseases research with this issue of the Spotlight newsletter.


October 26, 2021

Connie Lee, PsyD, is president and CEO of the Angioma Alliance and a member of the Brain Vascular Malformation Consortium (BVMC…

Anthony Anzell, PhD

October 19, 2021

Anthony Anzell, PhD, postdoctoral fellow at the University of Pittsburgh studying hereditary hemorrhagic telangiectasia (HHT) and HHT…


October 13, 2021

Douglas Marchuk, PhD, director of the Division of Human Genetics at Duke University and member of the Brain Vascular Malformation Consortium…

#RareDiseasesSpotlight: A photo of Helen Kim, PhD

October 7, 2021

Since its initial funding in 2009, the Brain Vascular Malformation Consortium (BVMC) has conducted clinical research and improved the care of…