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Earlier this year, Lisa Stockman Mauriello was diagnosed with a fast-moving form of ALS, a fatal neurological disease that gradually causes muscle weakness and paralysis.

So her doctor sought to enroll her in a clinical trial for an experimental drug being developed by Biogen (BIIB) called tofersen. But even though he is a clinical investigator in the late-stage study, Biogen would not admit her because enrollment had recently ended.

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