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PhRMA Honors Patient Advocates Ron and Raychel Bartek
Date:3/18/2010

Unfortunately, millions of families have experienced the same frightening diagnosis of a rare disease that doesn't have any known treatments. In fact, there are more than 1,200 recognized rare diseases, defined as those that affect less than 200,000 people in the U.S. According to the National Organization for Rare Diseases (NORD), roughly 25 million Americans suffer from such a condition.

Like his parents, Keith dedicated his life to raising awareness of the disease, hoping to drive research. "He may have only lived 24 years, but in those 24 years he inspired a lot of people to do the right thing and to accelerate research," Raychel Bartek explained. "Twenty-four years isn't a lot of time for any of us, but he had a purpose in his life and he knew that when he died."

"Because of the relatively small number of patients affected by these rare diseases, many have been historically under-treated," said PhRMA's Tauzin. "That's why America's pharmaceutical research and biotechnology companies continue their commitment to patients suffering from these so-called 'orphan diseases,' and much of that commitment has been facilitated by the Orphan Drug Act."

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SOURCE Pharmaceutical Research and Manufacturers of America
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