FACTS ABOUT RARE DISEASES: • Rare diseases present a - TopicsExpress

FACTS ABOUT RARE DISEASES: • Rare diseases present a significant health care concern since there 7,000 affecting more 30 million Americans. • Rare diseases may involve chronic illness, disability, and often premature death. • Rare diseases are complex, and often with inadequate or no treatment, thereby representing a disproportionate share of health care spending. • Patients with rare diseases are frequently misdiagnosed or are undiagnosed. • To advance medical research on rare diseases, a research network facilitates collaboration, enrollment in studies and trials, and sharing of data.

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