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Trailblazers to Host First Employability Boot Camp

15 March 2018 / Posted in: Information

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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Alison Daniels' Fundraising Story Alison Daniels' Fundraising Story

12 March 2018 / Posted in: Help Us

Alison shares memories of her cousin, Katie, who had SMA and sadly passed away when she was 7 years old. Alison is taking on two personal fundraising challenges to raise funds for SMA Support UK.

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Nusinersen Expanded Access Programme for SMA Type 1 Update

12 March 2018 / Posted in: Treatments & Research

NHS England has now agreed to fund all children with SMA Type 1 who have been diagnosed by age 7 months, irrespective of the number of SMN2 copies they have. This is good news and our thanks go to Professor Francesco Muntoni who has tirelessly led the advocacy for this.

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Improving Transitions for Young People Fund

01 March 2018 / Posted in: Information

This fund is Together for Short Lives' ground-breaking funding programme which seeks to address the cliff edge in care experienced by young adults in their transition from children’s to adult services. Applications now open for organisations across the UK.

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What is the Likely Timeline for any Decisions about Access to Nuisnersen in England?

28 February 2018 / Posted in: Treatments & Research

We have had a number of queries about what is happening about any Managed Access Agreement and decisions from NICE. You can read our understanding of what is most likely, here.

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SMA Support UK at the International Scientific Congress on SMA 2018

27 February 2018 / Posted in: Treatments & Research

Organised by SMA Europe with Brunhilde Wirth as the Scientific Chair, the first International Scientific Congress on SMA was held at Jagiellonian University in Kraków, Poland from 25th-27th January 2018. More than 100 laboratory and clinical SMA studies were presented by researchers from across the world to over 450 attendees.

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Biogen Releases Statement on CHERISH Data and Plans for New Clinical Research

21 February 2018 / Posted in: Treatments & Research

Biogen has provided a community statement on the final results from CHERISH, a Phase 3 study of SPINRAZA.

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Are you Willing to Talk to the Media About your Experience of SMA and Access to Nusinersen?

16 February 2018 / Posted in: Treatments & Research

As part of our ‘working together for access to nusinersen’, MDUK is managing our media contact & would like to hear from you. You'd be fully supported by a member of the MDUK media team through the interview process, & you'd get to choose which media you're happy to speak to.

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Your Views on the Need for Access to Emotional and Psychological Support

16 February 2018 / Posted in: Information

This is a vital element of support for individuals and families to manage and cope with muscle-wasting conditions. The All Party Parliamentary Group (APPG) for MDUK's new inquiry into access to psychological support is now taking evidence. You can give your views.

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Are you Affected by SMA Type 1 and Willing to Share your Experience with TreatSMA?

16 February 2018 / Posted in: Treatments & Research

As part of our ‘working together for access to nusinersen’, TreatSMA is gathering people’s experiences to present to NICE. If you are willing to take part, please click here to find out more.

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