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SMC Nusinersen Decision Timeline

09 April 2018 / Posted in: Research

The Scottish Medicines Consortium (SMC) decision on whether it will recommend that the Scottish NHS funds nusinersen and, if so, for whom, will be published on the SMC website after 2pm on Monday 7th May.

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New Resource From Together For Short Lives

03 April 2018 / Posted in: Information & Support

‘A checklist to a good transition’ joins their list of resources aimed at improving the experiences of young people moving from familiar children’s services into adult services.

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Disability Rights UK Guide: Into Higher Education

29 March 2018 / Posted in: Information & Support

'Into Higher Education' is a guide for anyone with a health condition, learning difficulty or disability, thinking about studying in higher education starting September 2018.

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Nusinersen Treatment in Later Onset SMA - Results of the CHERISH Trial

28 March 2018 / Posted in: Research

In February 2018, the prestigious New England Journal of Medicine published the results of the Nusinersen trial known as the ‘CHERISH trial’. This was a study that looked at the effects of giving Nusinersen to 126 children with later onset SMA.

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Information and Support over Easter

26 March 2018 / Posted in: Information & Support

Our office is closed from 3.30pm on Thursday 29th March 2018. We re-open on Tuesday 3rd April 2018 at 9.00am. For further information / support during this time, please click here to find out more.

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Patient Presentation at the SMC PACE Meeting

19 March 2018 / Posted in: Research

Our thanks to two parents who shared their personal stories at the Scottish Medicines Consortium (SMC) Patient and Clinical Engagement (PACE) meeting. Their testimonies were very powerful and moving and we are very grateful to them for taking this on.

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Petition to Close School Transport Loophole

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.

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Survey and Submission to NICE about Access to Nusinersen

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.

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Roche Community Update

16 March 2018 / Posted in: Research

Roche has provided the following community statement on RG7916 and Olesoxime investigational programs.

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Trailblazers to Host First Employability Boot Camp

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.

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