National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) is an American non-profit organization aiming to provide support individuals with rare diseases by advocating and funding research, education, and networking among service providers. It was founded in 1983 by Abbey Meyers, along with individuals with rare diseases leaders of rare disease support groups, and it is a 501(c)3 tax exempt organization.

History

The organization grew out of an "informal coalition" of support groups and families called together in the late 1970's to advocate legislation supporting development of orphan drugs, or drugs for treating rare diseases. They succeeded in getting the United States Congress to pass the Orphan Drug Act (ODA) in early 1983.

The initial coalition was led by Abbey Meyers, whose son had Tourette syndrome. Tourette syndrome is a rare neurological disorder that was estimated by the National Institutes of Health (NIH) to affect only 100,000 people in the United States. Meyers' son was helped by an experimental drug that the manufacturer ceased to develop because they assumed it would not be profitable enough. After passage of the Orphan Drug Act the coalition founded NORD with Meyers as its president. In 2007 Meyers announced her retirement from the NORD presidency; the president is now Peter Saltonstall.