UK campaign for access to treatments and support for those with spinal muscular atrophy
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…
Today a group of TreatSMA families attended a meeting of the All-Party Parliamentary Group for Muscular Dystrophy at the House of Lords.
Today a group of TreatSMA families attended a meeting of the All-Party Parliamentary Group for Muscular Dystrophy at the House of Lords.
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,…
First ever treatment for life-devastating condition is approved by European Commission!
First ever treatment for life-devastating condition is approved by European Commission!
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.
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.
