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Registration for the Public Gallery for the 27th June NICE Committee meeting

25 May 2018 / Posted in: Information & Support

This opens on 30th May and closes 13th June.

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Shoesday 2018 Shoesday 2018

24 May 2018 / Posted in: Help Us

Take part in a Shoesday with your clasSMAtes to help raise money and awareness of SMA! It's easy to do; pick a date, get everyone to wear odd shoes to school and donate to SMA Support UK.

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Biogen's Response to Charities' Letter

23 May 2018 / Posted in: Research

On 16th May, the SMA charities wrote to leading managers of Biogen urging them to review their pricing and resubmit their application with the aim of Spinraza access being extended to those with SMA Types 2 and 3. Read Biogen's response.

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New International Standards of Care for SMA

22 May 2018 / Posted in: Research

You can now read the new recommendations as to what assessments and interventions families should expect to find in any neuromuscular centre. A family-friendly version is being worked on now.

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Charities Send Joint Letter to Biogen

16 May 2018 / Posted in: Research

Today, we have written to leading managers of Biogen about the SMC's decision that due to pricing, nusinersen may only be accessed by those with SMA Type 1. We are urging Biogen to review their pricing and resubmit their application with the aim of access being extended to those with SMA Types 2 and 3.

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What’s Happening with UK SMA Patient Databases?

14 May 2018 / Posted in: Research

Biogen, has recently announced an investment of £450,000 over 3 years to further facilitate and accelerate the ability to bring together the current databases and to expand the programme to include more UK centres.

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AveXis Issues Community Statement on the SPR1NT Trial

08 May 2018 / Posted in: Research

AveXis, the gene therapy company developing a new approach to treat SMA known as AVXS‐101, recently treated the first patient in a new study known as SPR1NT. They have provided the following community statement.

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Scottish Medicines Consortium (SMC) Decision and Next Steps on Access to Nusinersen

07 May 2018 / Posted in: Research

The SMC has just recommended nusinersen to be funded only for children with SMA Type 1. Whilst we recognise this is a positive step forward, it is hugely disappointing that children, young people and adults with SMA Type 2 or Type 3 who wish to access, and could potentially benefit from, this treatment still don’t have this opportunity. We will now be pushing for a reassessment of the treatment. You can help.

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Biogen Community Update re SMC Routine Funding Recommendation

07 May 2018 / Posted in: Research

Following the Scottish Medicines Consortium's announcement of recommending nusinersen to be funded only for children with SMA Type 1, Biogen has released the following community update.

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Extending Rights to Personal Health Budgets

04 May 2018 / Posted in: Information & Support

This survey seeks views on extending specific groups rights to an integrated personal budget (e.g.people who access wheelchair services whose posture and mobility needs impact their wider health & social care needs) and on the potential to incorporate additional funding streams into that budget.

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