Author: TreatSMA
SMA community rallies nationwide to demand access to Spinraza treatment
Yesterday in London and Manchester we stood demanding the right for the SMA community to access the only treatment, Spinraza.
Come and join the protests today!
Come and join us at the protests today!
September 7th TreatSMA protests against NICE decision
On Friday 7th September TreatSMA and the community will stand alongside each other and hold a protest against the proposed decision to not recommend the life-saving drug Spinraza for treating children and adults.
Nusinersen EAP will close for newly diagnosed babies from November
Nusinersen Expanded Access Programme will close for new patients on 1 November 2018, even as those currently in the programme will continue without changes.
Clinical experts and SMA groups lambast NICE on nusinersen guidance
Leading UK physicians and SMA advocacy groups react negatively to the proposed negative recommendation on nusinersen therapy.
Taking our fight for treatment to the media
The SMA Community takes the fight for treatment to the public media.
Biogen statement to SMA community re: NICE ACD
Biogen has shared with us their stance on the proposed Spinraza guidance.
NICE refuses to recommend Spinraza to treat SMA
Shocking news. The National Institute of Health and Care Excellence officially recommends that nusinersen (Spinraza®) is NOT offered through the NHS to anyone with SMA.