The National Organization for Rare Disorders (NORD)

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Index of Rare Diseases

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

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Organizational Database

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

 

News Briefs

NIH Opens New Clinical Research Hospital

The National Institutes of Health (NIH) is celebrating the opening of its new 238-bed research hospital - a facility one patient called "the house of hope", according to the Washington Post, at the dedication ceremony on Sept. 22. The new facility, totally dedicated to clinical research, is the most significant addition to the NIH campus in more than 50 years. It will be called the Mark O. Hatfield Clinical Research Center in honor of the senator from Oregon who provided steadfast support to NIH and clinical research for 30 years until he retired in 1997.

Sen. Hatfield, 82, spoke at the dedication ceremonies. "I think this is a time to turn our attention to the underserved," he said. "I think specifically of the orphan diseases. The National Organization for Rare Disorders says there are 6,000 rare diseases... affecting 25 million Americans. Few have registries. Few have research funding. And I think we ought to recognize that the funding they do get is but $12 million, half of the authorized level of $25 million."

Annually, more than 1,000 clinical studies are conducted at NIH, and the new building will carry on the "bench-to-bedside" tradition of the original NIH Clinical Center, with patient care units just steps away from research labs. The first patients will move into the new building in December.

To view a video about the NIH clinical center and the dedication of the new Hatfield Center, go here. You will need to install Real Player if you do not already have it. Click here to install the player for free.

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

Previous News Briefs

ICORD 2008

FDA and European Union Adopt Shared Form

NORD Representatives Address Congress

CETT Increases Access to Genetic Tests

NORD Honors Innovators at 2007 Tribute Banquet

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Last modified Friday, March 12, 2010