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Update on Access to Nusinersen

26 October 2018

Thank you to the patient and clinical experts who strongly advocated for access to nusinersen at NICE’s committee meeting this week; to clinicians, families and adults who: expressed their views in their submissions to NICE; wrote letters to MPs, NICE, NHS England and Biogen; were there on the day.

There can be no doubt we have been heard, but at this stage we don’t know the outcome.

We expect to hear in the next few weeks and will of course let you know. In the meantime, we are urging Biogen to extend their EAP for SMA Type 1 closure date to 1st December.