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Spotlight on Rare Diseases


The Newsletter of the National Institutes of Health-funded Rare Diseases Clinical Research Network

In this Issue:

Phenylketonuria Over Time: What We’re Learning from a Natural History Study Rare Research Report May 2024 Go to Issue

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

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May 2024

April 2024

March 2024

February 2024

January 2024

December 2023

November 2023

October 2023

August 2023

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

Spotlight on Rare Diseases Newsletter Staff

Dakota Campbell, RDCRN Data Management and Coordinating Center
at Cincinnati Children’s Hospital Medical Center