Important: The Big SMA Protest on 6th March
On 6th March, we will gather in front of NICE Manchester office to loudly demand access to Spinraza. But there are rules to follow.
UK clinicians publish an open letter about access to Spinraza
UK’s leading clinicians have published an open letter in The Guardian, urging the health authorities to provide access to Spinraza treatment.
Spinraza approved in China
An estimated 30 to 40 thousand people with spinal muscular atrophy will soon have access to the first-ever effective treatment for this life-limiting disorder as China’s health authorities granted marketing authorisation to nusinersen (Spinraza®).
Thousands demand Spinraza to be made available for adults in Croatia
Thousands of people are taking to streets across Croatia. The reason is that Spinraza, the life-saving treatment for spinal muscular atrophy, is not available there for adults living with SMA.
Turkey starts offering Spinraza to all
Health authorities in Turkey decided to offer Spinraza as a standard therapy to all people with spinal muscular atrophy.
SMA families take to streets in Ireland to demand access to Spinraza
Hundreds of people took to streets in Dublin in protest against the continuous denial of Spinraza treatment by Irish health authorities.
MP drop-in event in the House of Commons
MP drop-in, House of Commons on 25th February 2019
Talking about SMA on Rare Disease Day
On Tuesday the 26th the TreatSMA team met the new generation and talked about living with rare diseases like SMA.