May 20 2008
NIH on Monday announced a pilot program that will study extremely rare diseases in people and could provide some no-cost care for study participants, the AP/San Francisco Chronicle reports.
The Undiagnosed Diseases Program will accept 100 physician-referred patients annually who will undergo up to one week of additional testing at the Clinical Center at NIH's Bethesda, Md., hospital.
About 10,000 new patients sign up annually to be part of the estimated 1,500 research studies taking place at the Clinical Center, many of them for rare diseases. William Gahl, a developer of the new program, said, "These patients are to a certain extent abandoned by the medical profession because a brick wall has been hit," adding, "We're trying to remove some of that."
While the program does not promise a diagnosis, there is hope that examining some of the "super-rare" diseases will provide clues for understanding and treating more common illnesses, the AP/Chronicle reports. NIH Director Elias Zerhouni said, "We believe this is not only a service to be rendered, but also knowledge to be gained" (Neergaard, AP/San Francisco Chronicle, 5/19).
 This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.
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