At the request from TreatSMA, on Monday 24 September five members of TreatSMA held a meeting with Roche in London. We discussed our advocacy work and general wider issues facing the SMA Community.

We agreed on the importance of Roche keeping us as up to date as possible, particularly on key developments in their clinical development programme. This is something they have very much taken on board. Roche also confirmed they are expecting a data release for SUNFISH and FIREFISH trials during the World Muscle Society Congress and will share the release once this is publicly available. As soon as we have details from Roche with a more in-depth update on their clinical trials programme we will post these on our website.

The Roche UK team share our frustration about the lack of trial sites in the UK and recognise the disappointment felt across the SMA community. They assure us they are working closely with their global team to explore options for physicians and patients in the UK to receive risdiplam in the future where clinically appropriate and will update us on this as soon as they can. They also reassured us that the whole organisation is working hard to explore how they can accelerate the general availability of risdiplam in the UK.

We have shared our thoughts with Roche concerning the approach they might want to take with NICE, should the receive marketing authorisation. They will come back to us in due course to obtain our advice upon some of the data generation work they will be doing in relation to a NICE submission.

TreatSMA will continue to have strong lines of communication open with Roche UK as well as their global teams and keep our Community updated.