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.
Irish families demand Spinraza NOW on World Rare Disease Day
Irish families will once again march on the Dáil this Thursday 28th February to demand the Health Service Executive approve Spinraza NOW.
Support for the 6th March SMA Vigil
Support is available for the 6th March Manchester Vigil.
Updated TreatSMA press release on current developments
A TreatSMA press release on the current status of nusinersen (Spinraza®) appraisal.
A report names Spinraza as most high-profile case of “inflexible, inappropriate” approach to orphan drug appraisal
Spinraza has been called the most high-profile case of “inflexible, inappropriate” approach by NICE to some rare disease drugs in a newly published analysis.