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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

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

Sheldon Schuster, Vice-Chairman
Keck Graduate Institute of Applied Life Sciences

Marshall Summar, MD, Treasurer
Children's National Medical Center

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

Directors At Large

Pat Furlong, Chair, Advocacy Committee
Parent Project Muscular Dystrophy

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

Nancy Harris

Kim M. Hollander
The Oxalosis and Hyperoxaluria Foundation

Sarah Krug

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.

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