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Petition to Close School Transport Loophole

19 March 2018 / Posted in: Information & Support

Contact have found that more and more disabled children are being refused school transport or being charged for it, as councils exploit a loophole in the law. They are calling on the government to close this loophole.

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Survey and Submission to NICE about Access to Nusinersen

19 March 2018 / Posted in: Research

Thank you to all of you who responded to our survey about the impact of SMA and views about access to nusinersen. You can read both the results of this and our submission to NICE here.

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Roche Community Update

16 March 2018 / Posted in: Research

Roche has provided the following community statement on RG7916 and Olesoxime investigational programs.

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Trailblazers to Host First Employability Boot Camp

15 March 2018 / Posted in: Information & Support

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: 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 & Support

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: 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: 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: Research

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

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