Author: TreatSMA
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.
Dawn’s story
My name is Dawn Wilbur: aged 54 and proud mother of a happy, fun, sporty, typical ‘woteva’ teenage son. We are extremely blessed to live in a picturesque village in Cheshire. I live with type 3 SMA. My intelligence and cognitive abilities remain unaffected (guess that’s a matter of opinion!?). I was able to crawl,…
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.
EAP in the UK
EAP started/starting Newcastle Belfast East Dundee Great Ormond Street Oxford Evelina Leeds Liverpool Glasgow Bristol Cardiff Sheffield (August) Working towards EAP Cambridge Birmingham Oswestry Manchester We’re still waiting on responses from St George’s (London) Contacts we have Evelina Childern’s Hospital: Dr Elizabeth Wraige, elizabeth.wraige@gstt.nhs.uk Cardiff: Dr Louise Hartley, louise.hartley@wales.nhs.uk Newcastle: Prof Volker Straub, volker.straub@newcastle.ac.uk Liverpool: Dr…
EMA opinion on broad-label approval for Spinraza
Committee for Medicinal Products for Human Use of the European Medicines Agency adopts a positive opinion on Spinraza.
Paris option for nusinersen
Dear Members of SMA Community, If any of you want to know more about Paris option for type 1 and be up to date with other developments, please get in touch with TreatSMA members by email on treatsma@treatsma.uk. We are working very hard to help you ALL and you must understand it is not just…