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First open TreatSMA meeting

  • 21 September 2017

On Moday 18 September TreatSMA families held a meetup in order to get updates about treatments and discuss actions needed for fast and broad access to SMA therapy in the UK.

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Letter to NHS England re. criteria for Expanded Access Programme

  • 27 August 2017

On 23 August 2017, TreatSMA along with SMA Trust, SMA Support UK and MD UK signed a letter addressed to the Head of Specialised Commissioning Team at NHS England. We urged a review of the published commissioning policy for inclusion of SMA 1 patients in the Expanded Access Programme of nusinersen.

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Progress on Early Access Programme of Spinraza

  • 1 August 2017

Dear Community, During the last few weeks NHSE and Biogen has been discussing the support for EAP. As we know, NHSE current official position is that they are not willing to fund additional auxiliary costs associated with Spinraza administration. Whilst…

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