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Page last updated: 29th January 2024

The Nusinersen Managed Access Agreement was first agreed in July 2019 and, following review, has since been updated. Our website pages summarise what’s happening now:

SMA UK and the other Patient Groups have all been part of the Managed Access Oversight Committee. If you are concerned about your access, please talk first and foremost to your medical team, but do please get in touch if you want to discuss your access.

In 2024, The National Institute of Health and Care Excellence (NICE) is reviewing whether to recommend that the NHS continues to fund nusinersen treatment. Read more >