On Moday 18 September TreatSMA families held a meetup in order to get updates about treatments and discuss actions needed for fast and broad access to SMA therapy in the UK.
It appears that UK is again lagging behind many European countries as regards both access to Spinraza and clinical trials of new molecules.
This was the first TreatSMA meeting that all of UK SMA families were weclome to attend. All in all, 17 families arrived at Amba Hotel in London. So much energy and determination was there! A number of new initiatives were discussed and everybody understood and agreed that the SMA Community needs to unite and act strongly if wide access to treatments is to happen in the UK.
Thank you everyone who took time to join the event and volunteered to support our efforts. We will outline the next steps soon.