The National Organization for Rare Disorders (NORD)


Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,150 diseases.

Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,150 diseases.

View sample report

Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

NORD's Washington OfficeRead about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

NORD Board Of Directors, 2005-2007

  • Carolyn Asbury, PhD (Chair)
    Individual

  • Frank Sasinowski (Vice Chair)
    Individual

  • Kimberly Symonds (Secretary)
    Wilson's Disease Association

  • Stephen Bajardi (Treasurer)
    National Kidney Foundation)

Directors At Large

  • Tamara Asseyev (Individual)
  • Karen Ball (Sturge-Weber Foundation)
  • 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)
  • Beth Coimbra (The Erythromelalgia Association)
  • Joyce Wilcox Graff (Von Hippel-Lindau Family Alliance)
  • Josephine Grima, PhD (National Marfan Foundation)
  • Nancy Harris (Individual)
  • Christopher Jennings (Individual)
  • Desiree Lyon (American Porphyria Foundation)
  • Judit Ungar (Tourette Syndrome Association)
  • Agnes Varis (Individual)

Non-Board Members on Committees

  • Sue Levi-Pearl (Ex-officio Non-board Member)

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Since 1983, working toward the prevention, treatment, and cure of rare “orphan” diseases.

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Last modified Wednesday, July 30, 2008