Drugmaker Raptor's willingness to interact with patients and advocacy groups led to the creation of newly approved Procysbi to treat the rare kidney disease nephropathic cystinosis. Other drugmakers are following Raptor's lead to stay competitive and shift focus from regulatory approval to value for patients, says National Health Council executive vice president Marc Boutin. "It really requires a cultural shift within the researchers and within the organizations," Boutin said. "And it requires that multiple silos within any pharmaceutical company have to come together and figure out what is that strategy going to be."

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