NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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NORD Board Of Directors, 2009
- Carolyn Asbury, PhD (Chair)
Individual
- Frank Sasinowski (Vice Chair)
Individual
- Kimberly Symonds (Secretary)
Wilson's Disease Association
- Stephen Bajardi (Treasurer)
International Rett Syndrome Foundation
Directors At Large
- Estelle Benson (Guillain Barre Syndrome Fdt. Int'l)
- Edward R. Boyer (Mercy Medical Airlift)
- James Broatch (Reflex Sympathetic Syndrome Assoc. of America)
- Claire Centrella (Dystonia Medical Research Foundation)
- Brenda Duffy,(Neurofibromatosis, Inc.)
- Josephine Grima, PhD (National Marfan Foundation)
- Nancy Harris (Individual)
- Christopher Jennings (Individual)
- Emil Kakkis (Individual)
- Marybeth Krummenacker, (Cystinosis Research Network)
- Desiree Lyon (American Porphyria Foundation)
- Mary Sprague, (Dystrophic Epidermolysis Bullosa Research, DeBRA)
- Judit Ungar (Tourette Syndrome Association)
- Agnes Varis (Individual)
- Charlene Waldman, The Paget Foundation: For Paget Disease of Bone and Related Disorders
- Wendy White, (Siren Interactive Corporation)
Non-Board Members on Committees
- Sue Levi-Pearl (Ex-officio Non-board Member)
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Over 1200 Disease Reports
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Since 1983, working toward the prevention, treatment, and cure of rare
“orphan” diseases.
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