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CLOSED SEE UPDATE BELOW – Patient and Caregiver Survey

  • 10 September 2019

Acaster Lloyd Consulting Ltd, an independent research consultancy specialising in patient research, on behalf of a pharmaceutical company, is conducting an online survey for adults and caregivers of children with a medical diagnosis of spinal muscular atrophy (SMA) to understand views about the importance of different aspects of treatment for SMA and need your help.

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Spinraza rollout update

  • 8 September 2019

Now that the MAA has been released attention turns towards monitoring progress with regards to the implementation of treatment for those currently eligible. Eligible patients should have access to treatment within 90 days of the NICE guidance being released subject to any clinical or commissioning issues. This is what we know so far.

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TreatSMA community shows amazing generosity

  • 5 September 2019

Recently, acting as part of TreatSMA, Gary McKie (trustee) asked the community if anyone had a panthera chair that a young North East family could loan, to keep their sons arm strength up, as his consultant had recommended sourcing a manual chair.

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Biogen release community statement

  • 7 August 2019

Biogen UK has released new community statement with regards to access to Spinraza in the UK. TreatSMA, SMAUK and MDUK have asked important questions and this statement provides some insight in the process and what to expect.

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Party time!!!!!!!!!!

  • 5 August 2019

In celebration of the approval of Spinraza the Annabelle Rose Foundation organised a party called the Cirque du Spinraza where many of the community attended on Saturday.

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