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New European Pivotal Study Announced by AveXis

09 February 2017 / Posted in: Research

AveXis has announced details of a European pivotal trial of their gene therapy drug for SMA, AVXS-101.

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The National Key Scheme - Opening Doors to Independent Living

09 February 2017 / Posted in: Information & Support

Be in control and buy a Radar Key from Disability Rights UK for priority access to over 9000 accessible toilets in the UK.

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Disability Rights UK Short Seminars

07 February 2017 / Posted in: Information & Support

Do you employ a personal care assistant, or know someone who does? These short seminars will explain the law surrounding employing a personal care assistant.

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Katherine's Fundraising Story Katherine's Fundraising Story

02 February 2017 / Posted in: Help Us

Katherine shares memories of her niece Amber, who had SMA Type 1 and sadly passed away, and why she was inspired to raise funds for SMA Support UK.

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Carl's 2017 Challenge! Carl's 2017 Challenge!

24 January 2017 / Posted in: Help Us

Carl is hoping to raise £2017 for the 2017 miles he'll be running in 2017! Read more here about why he's taking on this challenge for SMA Support UK.

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Update on the UK Expanded Access Programme (EAP) for Nusinersen for Children with SMA Type 1

20 January 2017 / Posted in: Research

SMA Support UK, Muscular Dystrophy UK and the SMA Trust have been talking with Biogen about what progress there has been on extending the EAP in the UK. You can read the update here.

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Biogen and SMA Europe Provide Community Update on Nusinersen

19 January 2017 / Posted in: Research

In response to a request from SMA Europe, Biogen and the board members of SMA Europe had a call on Wednesday 11th January 2017 to discuss the latest update on nusinersen.

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Joint Charities’ update following the NICE Scoping workshop (13th January 2017)

19 January 2017 / Posted in: Research

Representatives from SMA Support UK, MD UK, The SMA Trust and others attended a workshop which looked at the draft remit and scope for the proposed Technology Appraisal of nusinersen for treating spinal muscular atrophy.

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Roche drug RG7916 granted Orphan Drug Status in the US

17 January 2017 / Posted in: Research

The US Food and Drug Administration (FDA) has granted Orphan Drug Status to RG7916, a splice-modifying drug developed through a partnership between Roche, PTC Therapeutics, and the SMA Foundation.

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BBC Two's 'Big Life Fix'

12 January 2017 / Posted in: Information & Support

The producers of this show (which sees a skilled team of scientists, engineers and designers create bespoke technology for individuals and groups) are looking for people, for their second series, who feel they could benefit from a tailor-made invention.

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