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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.

NORD Board of Directors

Ronald J. Bartek (Chair)
Friedreich's Ataxia Research Alliance (FARA)

Sheldon M. Schuster (Vice Chair)
Keck Graduate Institute of Applied Life Sciences

Josephine Grima, PhD (Secretary), Chair, Nominating Committee
National Marfan Foundation

Brett Kopelan, (Treasurer)
Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)

Directors At Large

Pat Furlong, Chair, Advocacy Committee
Parent Project Muscular Dystrophy

Nancy Harris
Consultant

Kim M. Hollander
The Oxalosis and Hyperoxaluria Foundation

Sarah Krug
Cancer101

Marybeth Krummenacker
Cystinosis Research Network

Vicki McCarrell
Moebius Syndrome Foundation

Kari Luther Rosbeck
Tuberous Sclerosis Alliance

Frank J. Sasinowski
Hyman, Phelps & McNamara, P.C.

E. Michael D. Scott
Independence HealthCom Strategies Group, Inc. and Vox Medica, Inc.

Marshall L. Summar, MD
Children's National Medical Center

 
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