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How long will the UK EAP for eligible children with SMA Type 1 be open?

16 June 2017 / Posted in: Research

Today, Biogen confirmed that the actual date of closure of the EAP for new children will be agreed on a country by country basis. We are asking for it to stay open as long as possible in the UK and for the earliest possible advice as to when this closure date will be.

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New Clinical Care Research Article by Dr Alex Murphy

15 June 2017 / Posted in: Research

In this article, Dr Alex Murphy discusses the research carried out into three rare sub-types of SMA: Kennedy's, SMARD, Distal.

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Meet the New UK SMA Patient Registry Curator!

15 June 2017 / Posted in: Research

Jo Bullivant has recently taken over as Registry Curator and here she explains a bit more about her role and background.

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Biogen Announces European Ex-factory List Price for Nusinersen

09 June 2017 / Posted in: Research

Expected to be up to €270,000 (approximately £235,000) per individual per year for the three-dose maintenance year but the prices the NHS pays for medicines are not necessarily a reflection of the list prices.

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Quiz Night for SMA Support UK! Quiz Night for SMA Support UK!

09 June 2017 / Posted in: Help Us

Chartered Accountants and Business Advisors, Johnston Smillie, hosted a quiz night last week and raised a fantastic £1,100!

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Can you Help Describe the Experience of Living with SMA?

08 June 2017 / Posted in: Research

Individuals with SMA and caregivers are wanted by Adelphi Values to take part in a one-hour phone interview about their experience of SMA. Participants will receive £50.

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Universal Credit

08 June 2017 / Posted in: Information & Support

Contact a Family launched their Universal Credit #KnowYourClaim campaign on 10th May. This was to make sure people know about Universal Credit and how it might affect families.

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Care Quality Commission Seeking Responses To 'Share Your Experience' Initiative

07 June 2017 / Posted in: Information & Support

They want to hear from people living with a disability on their experience of using the services that they regulate; hospitals, GP surgeries, care homes, care at home services, for example.

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European Commission approves nuisnersen to be marketed as Spinraza for those with 5qSMA which includes SMA Types 1, 2 and 3

01 June 2017 / Posted in: Research

We should now hear soon if there will be a Ministerial referral to NICE for appraisal for funding by the NHS.

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Positive News for GOSH children with SMA Type 1

01 June 2017 / Posted in: Research

Families with eligible children with SMA Type 1 currently under Great Ormond St Hospital’s care, who wish to access the nusinersen EAP, will be able to do so over the next 3 months. This includes children under GOSH’s care who currently access treatment in Europe.

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