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Board of Directors

The NORD Board of Directors includes representatives of NORD Member Organizations as well as individuals who have demonstrated leadership in serving the rare disease patient community.

Marshall Summar, M.D., Chairman

Children’s National Medical Center

Sheldon Schuster Ph.D., Vice Chairman

Keck Graduate Institute of Applied Life Sciences

Steven A. Grossman, Secretary

HPS Group, LLC

Rick Barr, M.D.

Arkansas Children’s Hospital

Ronald J. Bartek

Friedreich’s Ataxia Research Alliance (FARA)

Preston Campbell, M.D.

Cystic Fibrosis Foundation

Jonathan Haines, Ph.D.

Case Western Reserve University

Susan Hedstrom

Foundation for Prader-Willi Research

Sarah Krug


Vicki McCarrell

Moebius Syndrome Foundation

Charles Mohan, Jr.

The United Mitochondrial Disease Foundation

Jim Palma

TargetCancer Foundation

Kathleen Weis

The Aplastic Anemia and MDS International Foundation

Roger Ziegler

Children’s National Medical Center