Following the miscommunication from NICE in terms of releasing information TreatSMA, Spinal Muscular Atrophy UK and Muscular Dystrophy UK contacted NICE to express our unhappiness with the communications sent out. We have now received a response which you can read below.
TreatSMA are asking for those not eligible for Spinraza, to contact MPs and get involved in the debate.
Come and join us for a night of fun, family, community and celebration.
Now that the new MAA has been released we wanted to share with you the process that we have gone through.
Please find below the official press release from NICE.
TreatSMA response to the latest release of the MAA released by NICE today
At the CureSMA conference this year Biogen on 1st July 2019 published new results from the NURTURE study.
Following recent communication from the Scottish Government, the Scottish Medicines Consortium have now provided guidance that, as well as being available for those with SMA Type 1, from July 2019 nusinersen can be prescribed for those with SMA Types 2 and 3.