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New Clinical Care Research Article: SMA Masterclass

05 December 2018 / Posted in: Treatments & Research

On the 19th of November, the first spinal muscular atrophy (SMA) masterclass took place in Rome organised by the neuromuscular network TREAT NMD. Our Clinical Care Research Correspondent, Dr Alex Murphy, has written an article summarising the topics covered within the masterclass.

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Coffee and Cake Day Coffee and Cake Day

04 December 2018 / Posted in: Help Us

Why not hold a festive bake sale in December to get family, friends and neighbours together over Christmas!

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Charities jointly write to NICE to ensure Nusinersen is on next committee meeting's agenda

04 December 2018 / Posted in: Treatments & Research

Today, SMA UK, MDUK and TreatSMA urged NICE to draw the appraisal process to a satisfactory conclusion at their next available meeting on 6th February 2019. Read the letter here.

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Scholar Rock announce SRK-015 orphan drug designation news and publish pre-clinical data

04 December 2018 / Posted in: Treatments & Research

Pharmaceutical company Scholar Rock has announced that the Committee for Orphan Medicinal Products (COMP) of the European Medicines Agency (EMA) has adopted a positive opinion on their experimental drug for SMA, SRK-015.

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SMA UK, MDUK and TreatSMA send joint letters to NICE, Biogen and NHS England

30 November 2018 / Posted in: Treatments & Research

As an act of ‘good faith’ in their commitment to progress discussions to a satisfactory conclusion, we urge all three parties to agree with immediate effect to implement, a ‘bridging solution’ for access to nusinersen for any infants with SMA Type 1.

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Newlife #FixTheFour Campaign

29 November 2018 / Posted in: Information, Support

Newlife are calling on the government to help those children whose lives are at risk because they don’t have the specialist equipment they need. Their report, 'Equipment Crisis for Disabled Children', outlines a four-point-plan to improve equipment services for disabled children and their families.

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SMA UK attended APPG Psychological Support Inquiry Launch

28 November 2018 / Posted in: Information, Support

On Wednesday 21st November, we joined MDUK at Parliament for the launch of this inquiry, which included discussing ways to improve the availability of appropriate psychological support. You can read their full APPG report here.

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UK SMA Patient Registry Update

28 November 2018 / Posted in: Treatments & Research

The UK SMA Patient Registry collects clinical and genetic information from individuals living with SMA to provide an aid to clinical study recruitment and an invaluable resource to the research community. To find out more about the registry and a snapshot of the data held, please click here.

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Don't Send a Card This Christmas Don't Send a Card This Christmas

28 November 2018 / Posted in: Help Us

For those who prefer to send an e-card, we have teamed up with DontSendMeACard.com where you can make a donation to SMA UK

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Able Move Chosen as Winner of Stelios Award for Disabled Entrepreneurs 2018

26 November 2018 / Posted in: Information, Support

Able Move, a start-up company that has created a portable solution for disabled travellers, has been chosen as winner of this award, in partnership with Leonard Cheshire. The company was founded by Josh Wintersgill, a cyber-security manager from Bristol, who has SMA.

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