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Biogen announces how long they intend to keep open UK EAP for SMA Type 1

13 July 2017 / Posted in: Research

They state that this will be for ‘the remainder of the year in the UK’ and that they will ‘re-evaluate the progress of the reimbursement progress and the EAP towards the end of 2017’.

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PTC Therapeutics Provide Preliminary Clinical Data on RG7916

11 July 2017 / Posted in: Research

PTC Therapeutics presented an update on their splice-modifying drug, RG7916, at the 2017 Cure SMA Conference in Orlando, USA.

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Discussion about access to nusinersen

06 July 2017 / Posted in: Research

The All Party Parliamentary Group (APPG) for Muscular Dystrophy will discuss access to nusinersen on Tuesday 18th July in the Houses of Parliament. SMA Support UK and families will be there.

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Announcing the successful outcome of the 9th SMA Europe Research call

06 July 2017 / Posted in: Research

Based on the recommendations received by its Scientific Advisory Board, SMA Europe have awarded a total of €357,800 towards 3 cutting-edge SMA research projects.

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Update from NHS England’s June 6th meeting about the SMA Type 1 EAP

05 July 2017 / Posted in: Research

Lead clinicians and centre service managers were called together. SMA Support UK was also present. Due to the election ‘purdah’ and the NHSE communications approval process no one at the meeting has been able to discuss what went on until now with the release of the meeting notes.

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Waiting for a Place on the UK Nusinersen Expanded Access Programme for SMA Type 1?

04 July 2017 / Posted in: Research

Please help progress access to the programme by letting SMA Support UK know about your child and where you live so that we can discuss the national picture with clinicians and NHS funding bodies.

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Biogen SMA Community Update re: nusinersen

03 July 2017 / Posted in: Research

This shares the information discussed on the SMA Europe call on June 9th – most of which we have already published but it is a useful summary of their position and what they are doing now.

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Our Survey: So What Did You Tell Us? Our Survey: So What Did You Tell Us?

29 June 2017 / Posted in: Our Community

Thank you to those of you who completed our survey and told us what you think of our current services and gave us your ideas about our future direction. Here are the results...

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Summer Social Events 2017 Summer Social Events 2017

28 June 2017 / Posted in: Our Community

You're warmly invited to attend one of our summer social events. Please book early to secure your place and we look forward to seeing you there.

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Paul's Fundraising Story Paul's Fundraising Story

27 June 2017 / Posted in: Help Us

Paul shares memories of his daughter, Leona, who had SMA Type 1 and sadly passed away, and why he was inspired to start raising funds for SMA Support UK. He will be taking on the 2017 Great North Run on 10th September.

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