13 August 2018 / Posted in: Treatments & Research
Nusinersen not recommended for funding by NICE is the devastating decision for so many, announced today. One glimmer of hope, however, is that it does leave the door open for a Managed Access Agreement. Comments are needed by 5th September.
06 August 2018 / Posted in: Support
Following the phenomenally positive response to our recent merger consultation, we are delighted to announce that the Boards of both organisations have agreed to merge at the end of September 2018.
03 August 2018 / Posted in: Treatments & Research
The National Screening Committee (NSC) has invited us to give comments and feedback on its June 2018 evidence review. Their current recommendation is ‘systematic population screening programme not recommended’. When we submit our response, we would like to represent views from the SMA community about screening newborns for SMA. You can let us know your thoughts and take our survey.
02 August 2018 / Posted in: Treatments & Research
We have received this community update which includes Q and As about the potential risk of hydrocephalus.
25 July 2018 / Posted in: Help Us
Would you like to help SMA Support UK raise funds and awareness to ensure our vital services continue? If so, then why not consider joining one of our Fundraising Support Groups
25 July 2018 / Posted in: Information, Support
We are, once again, hosting events around the country so that children, young people, adults and families can meet up. Dates this year are earlier to try to avoid winter illness, bad weather and overstretching family diaries in the run up to Christmas.
24 July 2018 / Posted in: Treatments & Research
During the recent Cure SMA researcher meeting in USA, Roche shared progress details of the risdiplam programme which you can read more about here. The update also includes an acknowledgement of the disappointment that UK SUNFISH trial sites were not initiated in time to allow UK patients to take part.
24 July 2018 / Posted in: Support
Together for Short Lives has launched an online petition calling on the Prime Minister to use some of the recent 3.4% NHS funding boost to fund lifeline care for seriously ill children.
23 July 2018 / Posted in: Help Us
Our Coffee & Cake packs include recipes, inspirational stories, posters, balloons and bunting to help make your event a success. Order yours for free now!
23 July 2018 / Posted in: Information
Combining work and family life is a complex juggling act for all parents. But for parents of disabled children, the challenges are greater still. This new report highlights how parents of disabled children are struggling to hold down vital jobs.