03 July 2017 / Posted in: Research
This shares the information discussed on the SMA Europe call on June 9th – most of which we have already published but it is a useful summary of their position and what they are doing now.
29 June 2017 / Posted in: Our Community
Thank you to those of you who completed our survey and told us what you think of our current services and gave us your ideas about our future direction. Here are the results...
28 June 2017 / Posted in: Our Community
You're warmly invited to attend one of our summer social events. Please book early to secure your place and we look forward to seeing you there.
27 June 2017 / Posted in: Help Us
Paul shares memories of his daughter, Leona, who had SMA Type 1 and sadly passed away, and why he was inspired to start raising funds for SMA Support UK. He will be taking on the 2017 Great North Run on 10th September.
27 June 2017 / Posted in: Research
You can now read the detailed science behind the European Commission decision to authorise the marketing of nusinersen in Europe. This includes full details of the various clinical trials there have been.
26 June 2017 / Posted in: Help Us
Huge thanks to Ed and Nicky Hornsby for organising this amazing event on Saturday 3rd June - over £5,000 was raised!
26 June 2017 / Posted in: Our Community
Follow the link to download the latest copy of our Inspirations newsletter for Spring 2017.
26 June 2017 / Posted in: Information & Support
Rare Disease UK will be coordinating a new project that aims to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition.
23 June 2017 / Posted in: Information & Support
The Disabled Children’s Partnership are launching the 'Secret Life of Us' campaign on 28th June, joining forces to fight for better health and social care for disabled children, young people and their families in England.
22 June 2017 / Posted in: Research
AveXis has announced that the process to manufacture their gene therapy drug for SMA, AVXS-101, is now aligned with expectations of the US Food and Drug Administration (FDA).