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Delays in access to treatment: The SMA Community sends letters to key stakeholders

  • 30 November 2018

The untimely closure of the Expanded Access Programme of nusinersen and the continuing delays in having this treatment available on the NHS amount to a death sentence for babies diagnosed with the most severe form of SMA. For hundreds of others, they mean an irreversible muscle function loss. We the families at TreatSMA, just like the wider SMA community, are all incredibly frustrated with the apparent lack of progress while watching our near and dear ones waste.

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TreatSMA vigil on the decisive day

  • 23 October 2018

Today the entire SMA community is awaiting the outcome of the Committee meeting which is taking place at the National Institute of Health and Care Excellence in Manchester. The Committee is to decide whether spinal muscular atrophy will be treated on the NHS.

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