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NICE Opens Draft Scoping Consultation for 'Breakthrough' AveXis Gene Therapy for SMA Type 1

19 September 2018 / Posted in: Treatments & Research

Patient groups and clinicians have been invited to take part in this consultation which closes on 17th October. Treatment topics usually reach what is called ‘the scoping stage’ around the time the company plan to apply for a licence for its drug in the UK or Europe. SMA UK will be submitting a response.

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Our Response to the UK National Screening Committee Review of Screening for SMA

11 September 2018 / Posted in: Treatments & Research

Thanks to those who responded to our survey asking for your views on newborn screening. We concluded that a further urgent review of a newborn screening programme for 5q SMA in the UK is imperative.

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Our Response to NICE's Consultation Paper

08 September 2018 / Posted in: Treatments & Research

On 5th September we submitted our response to, NICE’s consultation paper which had been released on 14th August with the devastating news that they had not recommended nusinersen for funding by the NHS. You can read our response here.

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Money Matters Guide

31 August 2018 / Posted in: Information, Support

It's back to school time which can mean higher than normal costs, with new uniforms, stationery, bags etc. You might want to check out Contact's 'Money Matters' guide which includes details on the financial help you're entitled to if your child's at school.

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Charities write to Biogen urging them and NHS England to be Flexible on Price

29 August 2018 / Posted in: Treatments & Research

This is so that, as a matter of urgency, an MAA that merges seamlessly with the current EAP is set up and ensures that all others are also able to access nusinersen at the earliest possible opportunity.

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Access to Nusinersen Update & How You Can Help

24 August 2018 / Posted in: Treatments & Research

This update recently went out to those on our mailing list. It includes details on the MDUK parliamentary drop-in session that's been organised for 11th September, how you can contact your MP, responding to NICE by 5th Sept, and media involvement.

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Biogen Announces November Closure of the Expanded Access Programme for Infants Newly Diagnosed with SMA Type 1

23 August 2018 / Posted in: Treatments & Research

We urged Biogen not to take this step which creates yet more immense distress and worry for families. We will continue to focus our advocacy for access to treatment on the urgent need for NICE, NHS England and Biogen to agree the terms of a managed access agreement to replace this EAP ahead of 1 November, as well as the need for a long-term sustainable plan for access.

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Clinicians and SMA Charities Protest NICE Decision

21 August 2018 / Posted in: Treatments & Research

Clinicians and SMA Charities yesterday expressed the need for urgent action. You can read the letter sent to NICE, NHS England and the National Institute for Health Research, here.

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Welcome to all SMA Trust and SMA Support UK Supporters Welcome to all SMA Trust and SMA Support UK Supporters

16 August 2018 / Posted in: Help Us

We are delighted that these two wonderful charities are coming together as SMA UK. Whichever charity you’ve supported in the past, we hope that you will continue to support the SMA Community through SMA UK. Find out how the merger will affect your fundraising.

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Biogen’s Update to the SMA Community Following Publication of NICE’s Consultation Paper

15 August 2018 / Posted in: Treatments & Research

Biogen has provided this community statement in response to yesterday's announcement from NICE.

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