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.
NORD Board of Directors
E. Michael D. Scott (Chair)
Independence HealthCom Strategies Group, Inc. and Vox Medica, Inc.
Carolyn Asbury, PhD (Vice Chair)
Josephine Grima, PhD (Secretary), Chair, Nominating Committee
National Marfan Foundation
Brett Kopelan, (Treasurer)
Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)
Directors At Large
International Rett Syndrome Foundation
Ronald J. Bartek
Friedreich’s Ataxia Research Alliance (FARA)
Pat Furlong, Chair, Advocacy Committee
Parent Project Muscular Dystrophy
American Porphyria Foundation
Kim M. Hollander
The Oxalosis and Hyperoxaluria Foundation
Cystinosis Research Network
Moebius Syndrome Foundation
Kari Luther Rosbeck
Tuberous Sclerosis Alliance
Frank J. Sasinowski
Hyman, Phelps & McNamara, P.C.
Sheldon M. Schuster
Keck Graduate Institute of Applied Life Sciences
Marshall L. Summar, MD
Children's National Medical Center
Tourette Syndrome Association, Inc.
Wendy White, Chair, Marketing Committee