Skip to main content

Spotlight on Rare Diseases

Newsletter 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

Go to Issue:

August 2023

March 2023

February 2023

January 2023

December 2022

November 2022

October 2022

September 2022

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