Rare Diseases Clinical Research Network

In order to increase collaboration and critical resources related to diagnosing and treating rare diseases, the National Institutes of Health (NIH) created the Rare Diseases Clinical Research Network in November 2003.

With $51 million in grant funding over five years from several NIH components, the network originally consisted of seven consortia along with a Data and Technology Coordinating Center (DTCC). In September 2004, NIH expanded the network by adding three additional consortia and increased support to the DTCC, bringing overall funding to $71 million. In May 2006, NIH launched the first clinical studies of its Rare Diseases Clinical Research Network at about 50 sites across the United States and in several other countries including Canada, the United Kingdom, and Japan.

The consortia within the network represent several rare diseases. The network responds to the Rare Disease Act of 2002, which directed NIH to support "regional centers of excellence for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for rare diseases."