Contrary to global developments and expert advice, today the NHS formally refused to back a newborn screening programme for spinal muscular atrophy.
An event dedicated to the situation of SMA Families will take place on 25th February in the Parliament. Please invite your MP!
We are extremely happy to share the long-awaited news: the Scottish government will be making Spinraza available to all people with spinal muscular atrophy in Scotland.
For the third time a drug appraisal committee of the National Institute for Health and Care Excellence will meet to review the nusinersen (Spinraza) dossier. The meeting will take place on the 6 March in Manchester.