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NICE Announcement on Nusinersen

13 August 2018 / Posted in: Treatments & Research

Nusinersen not recommended for funding by NICE is the devastating decision for so many, announced today. One glimmer of hope, however, is that it does leave the door open for a Managed Access Agreement. Comments are needed by 5th September.

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SMA Support UK & The SMA Trust to Merge as Spinal Muscular Atrophy UK!

06 August 2018 / Posted in: Support

Following the phenomenally positive response to our recent merger consultation, we are delighted to announce that the Boards of both organisations have agreed to merge at the end of September 2018.

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What Are Your Views On Screening Newborns For SMA?

03 August 2018 / Posted in: Treatments & Research

The National Screening Committee (NSC) has invited us to give comments and feedback on its June 2018 evidence review. Their current recommendation is ‘systematic population screening programme not recommended’. When we submit our response, we would like to represent views from the SMA community about screening newborns for SMA. You can let us know your thoughts and take our survey.

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Biogen Community Updates re Hydrocephalus

02 August 2018 / Posted in: Treatments & Research

We have received this community update which includes Q and As about the potential risk of hydrocephalus.

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Fundraising Support Groups Fundraising Support Groups

25 July 2018 / Posted in: Help Us

Would you like to help SMA Support UK raise funds and awareness to ensure our vital services continue? If so, then why not consider joining one of our Fundraising Support Groups

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Autumn / Winter Events - Save The Date!

25 July 2018 / Posted in: Information, Support

We are, once again, hosting events around the country so that children, young people, adults and families can meet up. Dates this year are earlier to try to avoid winter illness, bad weather and overstretching family diaries in the run up to Christmas.

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Roche Community Update Re Risdiplam Development Programme

24 July 2018 / Posted in: Treatments & Research

During the recent Cure SMA researcher meeting in USA, Roche shared progress details of the risdiplam programme which you can read more about here. The update also includes an acknowledgement of the disappointment that UK SUNFISH trial sites were not initiated in time to allow UK patients to take part.

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Petition Launched to Fund Lifeline Care for Seriously Ill Children

24 July 2018 / Posted in: Support

Together for Short Lives has launched an online petition calling on the Prime Minister to use some of the recent 3.4% NHS funding boost to fund lifeline care for seriously ill children.

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Coffee and Cake Day Coffee and Cake Day

23 July 2018 / Posted in: Help Us

Our Coffee & Cake packs include recipes, inspirational stories, posters, balloons and bunting to help make your event a success. Order yours for free now!

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New Report By Working Families

23 July 2018 / Posted in: Information

Combining work and family life is a complex juggling act for all parents. But for parents of disabled children, the challenges are greater still. This new report highlights how parents of disabled children are struggling to hold down vital jobs.

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