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Biogen SMA Community Update re: nusinersen

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.

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Our Survey: So What Did You Tell Us? Our Survey: So What Did You Tell Us?

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...

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Summer Social Events 2017 Summer Social Events 2017

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.

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Paul's Fundraising Story Paul's Fundraising Story

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.

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European Medicines Agency (EMA) report on Spinraza

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.

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Golf Day and Dinner Dance Golf Day and Dinner Dance

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!

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Inspirations Spring 2017 Inspirations Spring 2017

26 June 2017 / Posted in: Our Community

Follow the link to download the latest copy of our Inspirations newsletter for Spring 2017.

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Rare Disease UK Announces New Project

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.

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The 'Secret Life Of Us' Campaign

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.

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AVXS-101 Gene Therapy Manufacturing Process Streamlined

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).

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