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  • The Morale Monologue Episode #6

    Posted by michael-morale on August 15, 2018 at 8:54 pm

    In this episode of the Morale Monologue, I’m going to be discussing a recent decision that Spinraza (Nusinersen) will not be recommended for funding by the NHS (National Health Service). The NHS, is one of the governing bodies in the UK. This decision was made in the past few days by NICE (National Institute for Health and Care Excellence). This devastating decision will impact many infants, adolescence and adults living in the UK. We, in the SMA community, need to make our voices heard, and I urge everyone to do their part so that those of us with a voice can defend those who live in the UK, who apparently do not have a voice at the present time. Please click on the links below to help our fellow SMAers in the United Kingdom.

     

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    Helpful Links:

     

    SMA Trust website:  https://smatrust.org/managed_access_spinraza/

    National Institute for Health and Care Excellence website: https://www.nice.org.uk/guidance/indevelopment/gid-ta10281/consultation/html-content

     

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    michael-morale replied 5 years, 10 months ago 1 Member · 0 Replies
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