Parents push for data sharing on rare disease drugs

Developing new drugs for rare diseases has been a blessing for patients, many of whom face a slow death march without a therapeutic to ward off the disease. But with several developers now crowding into the same field, some frustrated parents are urging developers to start sharing their data, removing some of the burden associated with having their children journey far and wide to receive a hoped-for therapeutic intervention, according to a story in The Wall Street Journal. And some have even offered $550,000 to help make that happen in one of the busiest fields in rare drug development. Story

 

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