People who are afflicted with rare diseases and mysterious illnesses are being sought by the National Institutes of Health, and those who meet the correct criteria could get some free care at the government's top research hospital as scientists study why they're sick.

"These patients are to a certain extent abandoned by the medical profession because a brick wall has been hit," Dr. William Gahl, who helped develop the NIH's new Undiagnosed Diseases Program, told the Associated Press. "We're trying to remove some of that."

The pilot program, announced May 19, can only recruit about 100 patients a year. But federal health officials hope that unraveling some of these super-rare diseases in turn will provide clues to more common illnesses.
"We believe this is not only a service to be rendered, but also knowledge to be gained," said NIH Director Dr. Elias Zerhouni.

About 10,000 new patients a year sign up for roughly 1,500 different research studies, many of them for rare diseases, at the NIH's Bethesda, MD, Clinical Center hospital.

The new mystery-disease program is aimed at people with the rarest of the rare diseases -- even those with truly brand-new ailments -- who otherwise would be turned away because there are no studies, yet, for their conditions or a researcher specifically tracking their symptoms. It doesn't promise a diagnosis, but the chance to be reevaluated by a team of renowned specialists.

To be considered for the new program, a doctor must refer a mystery patient to the NIH and send all medical files for evaluation. Accepted patients will undergo up to a week's additional testing at the Clinical Center, for free.

For more information, see http://rarediseases.info.nih.gov/undiagnosed or call 1-866-444-8806.

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