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NICE will review Spinraza again on 6 March

  • 1 February 2019

For the third time a drug appraisal committee of the National Institute for Health and Care Excellence will meet to review the nusinersen (Spinraza) dossier. The meeting will take place on the 6 March in Manchester.

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FAQ asked about type 1 SMA patients

  • 23 January 2019

Below are some the most frequent questions and problems that we are seeing within the Type 1 community. We have compiled a guide based on the evidence from the newly Published Standards of Care, AA diet website and other documents or protocols that are used within the community.

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Nasogastric intubation

  • 10 January 2019
At some point in your child’s life / your life, there may come a time when swallowing may become difficult or weight gain may become slower.
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Important survey

  • 17 December 2018

This is important! If we are to get Spinraza, we must work hard to get it. Please complete this survey.

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