Author: Andi Thornton
Morning in the life of an SMA type 2 family
Last night after finally finishing my sons physio, standing, stretches, chest physio, toileting putting his orthoctics on, a routine that can take up to two hours before bed I finally got to sit down. I than put the washing on, hung aload out, tided up from dinner, paid a bill online, opened up the mail…
Roche updates on RG7916 safety
Roche shared an update on the safety of RG7916.
NHS England publishes a commissioning policy on nusinersen EAP
NHS England has published an Interim Commissioning Policy on nusinersen EAP.
Progress on Early Access Programme of Spinraza
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 Biogen expressed willingness to cooperate, pharmaceutical companies in general are not allowed to pay doctors…
TreatSMA families take SMA cause to the Parliament
Today a group of TreatSMA families attended a meeting of the All-Party Parliamentary Group for Muscular Dystrophy at the House of Lords.
European Commission grants full authorisation for the first-ever treatment for SMA
First ever treatment for life-devastating condition is approved by European Commission!
Biogen meeting with TreatSMA, SMA Support UK, SMA Trust and MD UK
On the 19th of May, Biogen attended a meeting arranged between 4 patient advocacy groups: Muscular Dystrophy UK, SMA Trust, SMA Support UK and TreatSMA.