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That would be devastating for any hospital. All Children’s billed the program more than 0 million in 2016 — about 66 percent of its total charges, according to state data.

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The disorder results from the lack of a functional protein called ectodysplasin A, which signals the development of certain tissues in utero. The treatment the doctors used was a "fusion protein," or "protein-replacement therapy," that contained a key part of the functional protein, the authors wrote. Previous efforts to treat babies with the same protein shortly after birth had failed, Schneider said.
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