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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RDCRN Communications Working Group

Executive oversight of the RDCRN communications program is provided by the Communications Working Group, part of the RDCRN’s Strategic Planning Committee.


Mustafa Sahin, MD, PhD
Boston Children's Hospital


Dakota Campbell
Cincinnati Children’s Hospital Medical Center

Stephen Cederbaum, MD
University of California at Los Angeles

S. Ali Fatemi, MD
Kennedy Krieger Institute

Tracy Hart
Osteogenesis Imperfecta Foundation

Eileen King, PhD
Cincinnati Children’s Hospital Medical Center

Joyce Kullman
Vasculitis Foundation

Stacy Pike-Lagenfeld
Krabbe Connect

Marc Rothenberg, MD, PhD
Cincinnati Children’s Hospital Medical Center

Michael Seid
Cincinnati Children’s Hospital Medical Center

Jill Schlabig Williams
Cincinnati Children’s Hospital Medical Center

Tiina Urv, PhD
National Institutes of Health, Division of Rare Diseases Research Innovation


Spotlight on Rare Diseases Newsletter Staff

The newsletter is managed by staff within the RDCRN’s Data Management and Coordinating Center, which is based at Cincinnati Children’s Hospital Medical Center. 

Managing Editor

Jill Schlabig Williams

Staff Writer

Dakota Campbell