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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

Steven A. Grossman, Secretary

HPS Group, LLC

Rick Barr, M.D.

Arkansas Children’s Hospital

Ronald J. Bartek

Friedreich’s Ataxia Research Alliance (FARA)

Susan A. Berry, M.D.

University of Minnesota

Susan Hedstrom

Foundation for Prader-Willi Research

Kay Holcombe

Critical Path Institute

Neil Horikoshi

Aplastic Anemia & MDS International Foundation

Shafali Spurling Jeste, M.D.


Jim Palma

TargetCancer Foundation

Phillip L. Pearl, M.D.

Boston Children’s Hospital

Mike Porath

The Mighty

Peter L. Saltonstall