Category: Updates

MP drop-in event in the House of Commons
3 March 2019
Dawn Wilbur
MP drop-in, House of Commons on 25th February 2019
Talking about SMA on Rare Disease Day
27 February 2019
TreatSMA
On Tuesday the 26th the TreatSMA team met the youth and talked about living with rare diseases.
Irish families demand Spinraza NOW on World Rare Disease Day
27 February 2019
Andi Thornton
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 6^th March SMA Vigil
23 February 2019
TreatSMA
Support is available for the 6th March Manchester Vigil.
Updated TreatSMA press release on current developments
22 February 2019
TreatSMA
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
22 February 2019
TreatSMA
Spinraza has been called the most high-profile case of inflexible, inappropriate approach by NICE.
TreatSMA Vigil 6^th March 2019
22 February 2019
Andi Thornton
On 6th March, TreatSMA along with many families and adults from the SMA community will once again travel to Manchester for the 3rd appraisal meeting of nusinersen.
Eleanor Smith MP asks PM Theresa May about Spinraza
20 February 2019
TreatSMA
Eleanor Smith MP asked the Prime Minister about access to Spinraza during today’s PM Question Time.