Spotlight on Rare Diseases
The Newsletter of the National Institutes of Health-funded Rare Diseases Clinical Research Network
In this Issue:
Cerebral Cavernous Malformations Over Time: What We’re Learning from a Natural History Study Updating Guidelines for Clinical Management of Phelan–McDermid Syndrome Telehealth in Myasthenia Gravis: What We’re Learning from a Pilot Study Rare Research Report: August 2023 Go to IssueNewsletter of the Rare Diseases Clinical Research Network
Spotlight on Rare Diseases is the official newsletter of the Rare Diseases Clinical Research Network, an NIH-funded research network of 20 active consortia or research groups -- teams of researchers, patients, and clinicians -- each focused on a group of rare disorders. Look to this newsletter for news, features, and insights about rare diseases research from across our national network. Questions? Contact us at rd.dmcc@cchmc.org.
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Archived Issues
RDCRN Communications Advisory Group
Executive oversight of the RDCRN communications program is provided by the Communications Advisory Group, part of the RDCRN’s Strategic Planning Committee.
Tracy Smith Hart, Co-Chair
Chief Executive Officer, Osteogenesis Imperfecta Foundation
Brittle Bone Disorders Consortium
Henry J. Kaminski, MD, Co-Chair
George Washington University School of Medicine and Health Sciences
Myasthenia Gravis Rare Disease Network
Andrew C. Edmondson, MD, PhD
Children’s Hospital of Philadelphia
Frontiers in Congenital Disorders of Glycosylation Consortium
Amy J. Gray
Chief Executive Officer, Charcot-Marie-Tooth Association
Inherited Neuropathy Consortium
Spotlight on Rare Diseases Newsletter Staff
Managing Editor
Dakota Campbell, RDCRN Data Management and Coordinating Center
at Cincinnati Children’s Hospital Medical Center