Per the federal Rare Diseases Act of 2002, a rare disease is defined as one affecting fewer than 200,000 individuals in the U.S, or about 1 in 1,500 people.  There are roughly 7,000 known rare diseases affecting 25-30 million Americans, more than half of which are children.  Many are genetic, and are very difficult to diagnose and treat effectively.  30 percent of children diagnosed with a rare disease will die before their fifth birthday.

It is likewise difficult to secure funding for research on many of these diseases, as there are few doctors who specialize in them and few companies that can afford to search for treatments.   

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