19 March 2018 / Posted in: Information & Support
Contact have found that more and more disabled children are being refused school transport or being charged for it, as councils exploit a loophole in the law. They are calling on the government to close this loophole.
19 March 2018 / Posted in: Research
Thank you to all of you who responded to our survey about the impact of SMA and views about access to nusinersen. You can read both the results of this and our submission to NICE here.
16 March 2018 / Posted in: Research
Roche has provided the following community statement on RG7916 and Olesoxime investigational programs.
15 March 2018 / Posted in: Information & Support
This fully-funded weekend, being held in London on 19th and 20th May, focuses on the challenges facing young disabled people looking for work. There's also an evening social for people to meet up.
12 March 2018 / Posted in: Help Us
Alison shares memories of her cousin, Katie, who had SMA and sadly passed away when she was 7 years old. Alison is taking on two personal fundraising challenges to raise funds for SMA Support UK.
12 March 2018 / Posted in: Research
NHS England has now agreed to fund all children with SMA Type 1 who have been diagnosed by age 7 months, irrespective of the number of SMN2 copies they have. This is good news and our thanks go to Professor Francesco Muntoni who has tirelessly led the advocacy for this.
01 March 2018 / Posted in: Information & Support
This fund is Together for Short Lives' ground-breaking funding programme which seeks to address the cliff edge in care experienced by young adults in their transition from children’s to adult services. Applications now open for organisations across the UK.
28 February 2018 / Posted in: Research
We have had a number of queries about what is happening about any Managed Access Agreement and decisions from NICE. You can read our understanding of what is most likely, here.
27 February 2018 / Posted in: Research
Organised by SMA Europe with Brunhilde Wirth as the Scientific Chair, the first International Scientific Congress on SMA was held at Jagiellonian University in Kraków, Poland from 25th-27th January 2018. More than 100 laboratory and clinical SMA studies were presented by researchers from across the world to over 450 attendees.
21 February 2018 / Posted in: Research
Biogen has provided a community statement on the final results from CHERISH, a Phase 3 study of SPINRAZA.