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Millions Around World to Observe Rare Disease Day
Date:2/13/2009

at aren't approved. Medical and social services may be denied because those making the decisions are not familiar with the diseases. Also, treatments for rare diseases tend to be more expensive than treatments for more common diseases."

In 1983, the Orphan Drug Act was passed by Congress to create financial incentives for companies to develop treatments for rare diseases. Since then, nearly 330 "orphan" (for rare diseases) drugs and biologics have been approved by the U.S. Food and Drug Administration (FDA). FDA estimates that from 11 to 14 million Americans benefit from these products. However, that still leaves more than 15 million Americans with diseases for which there is no approved treatment.

Rare Disease Day also will highlight the unique partnership that exists among the patient community, government entities such as the NIH Office of Rare Diseases and FDA Office of Orphan Products Development, medical professionals, researchers, and companies developing orphan products.

Although this is the first Rare Disease Day observance in the U.S., it is the second globally. The concept was launched in Europe last year by the European Rare Disease Organization, EURORDIS, a sister organization to NORD. This year, Rare Disease Day also is being observed in other parts of the world, including Canada, Australia, and China. The plan is to have a global Rare Disease Day on the last day of February each year.

NORD, a federation of individuals and patient organizations, was established in 1983. It provides advocacy on behalf of the rare disease community; research grants and fellowships; educational services; and patient assistance programs.

For more information about Rare Disease Day activities in the U.S., go to NORD's website (www.rarediseases.org). For information about the global observance, go to

SOURCE National Organization for Rare Disorders (NORD)
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