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Background. The Problem:~ 25 million people in the United States are affected by one of approximately 6000 rare diseases:<200,000 individuals affected in the U.S. - or -for which no reasonable hope of new industry-sponsored drug development can be expectedRare Diseases Clinical Research Network (RDCRN):Established in 2003 - 5 year periodFour Rare Disease Consortia ? Ten by 2004One Data and Technology Coordinating CenterEach Consortia: multiple diseases / investigators / sites.

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