In patients with cavernous angioma (CA), lesions in the brain are caused by imbalances in the gut microbiome, according to a new study in the journal Nature Communications. Data from the
Data Helps Researchers Link Cavernous Angioma to Disordered Gut Microbiomes
Consortium Spotlight: Advancing Discoveries in Brain Vascular Malformations
Since its initial funding in 2009, the Brain Vascular Malformation Consortium (BVMC) has conducted clinical research and improved the care of patients with brain vascular malformations, conditions in which blood vessels of the brain are affected. Here, Helen Kim, PhD, principal investigator of the BVMC, shares the history of the consortium, current research, and future plans.
RDCRN Research Roundup: October 2021
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research below.
RDCRN Launches Contact Registry to Connect Patients, Researchers and Advance Rare Disease Research
The Rare Diseases Clinical Research Network (RDCRN) is launching a contact registry to connect rare disease patients with researchers and advance rare disease research. The registry will collect and maintain the contact information of people who want to receive information about rare diseases research. It will also inform participants about opportunities to participate in research.
RDCRN Research Roundup: July 2022
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research.
New Consortium Spotlight Articles Offer Look Inside Rare Diseases Research
We are launching a new article series that offers a window into rare diseases research with this issue of the Spotlight newsletter.
Senior Researcher Spotlight: Douglas Marchuk Leads Disease-Gene Discoveries in Brain Vascular Malformations
Douglas Marchuk, PhD, director of the Division of Human Genetics at Duke University and member of the Brain Vascular Malformation Consortium (BVMC), shares his start in rare disease research, exciting discoveries, and future goals.
Patient Spotlight: Anthony Anzell Fights Hereditary Hemorrhagic Telangiectasia with Endurance and Education
Anthony Anzell, PhD, postdoctoral fellow at the University of Pittsburgh studying hereditary hemorrhagic telangiectasia (HHT) and HHT patient, shares his HHT journey, from diagnosis, to ultramarathons, to the lab.
Patient Advocate Spotlight: Connie Lee Creates Connections for Cerebral Cavernous Malformation Research
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 licensed clinical psychologist and the mother of a daughter with multiple cavernous angiomas. Here, she shares her start in patient advocacy, current work, and future goals.
Training Program for Clinical Research in Rare Disease Launches New Session
The National Institutes of Health-funded R25 Rare Disease Clinical Research Training Program is launching a new training program for clinical research in rare disease. Now in its seventh year, this year-long, hybrid, free program is designed to support new investigators in the field of rare disease clinical research.