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The Association of American Medical Colleges has reported that rare diseases are tough to diagnose because most doctors don’t see them. “Patients tend to enter into what we call a ‘diagnostic odyssey,’” said Anne Pariser, MD, deputy director of the NIH Office of Rare Diseases Research. “It’s really awful for the patients. They go to doctor after doctor. Often this can take years of not knowing what’s going on. They start losing hope until they finally get referred to a specialist familiar with the disease.”