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.
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.
Patient Advocate Spotlight: Connie Lee Creates Connections for Cerebral Cavernous Malformation Research
October 26, 2021
Connie Lee, PsyD, is president and CEO of the Angioma Alliance and a member of the Brain Vascular Malformation Consortium (BVMC). She is also a…
Patient Spotlight: Anthony Anzell Fights Hereditary Hemorrhagic Telangiectasia with Endurance and Education
October 19, 2021
Anthony Anzell, PhD, postdoctoral fellow at the University of Pittsburgh studying hereditary hemorrhagic telangiectasia (HHT) and HHT patient, shares…
Senior Researcher Spotlight: Douglas Marchuk Leads Disease-Gene Discoveries in Brain Vascular Malformations
October 13, 2021
Douglas Marchuk, PhD, director of the Division of Human Genetics at Duke University and member of the Brain Vascular Malformation Consortium (BVMC),…
October 7, 2021
Since its initial funding in 2009, the Brain Vascular Malformation Consortium (BVMC) has conducted clinical research and improved the care of…