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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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The Roberts Family The Roberts Family

30 May 2017 / Posted in: Help Us

Steph and Rich Roberts tell us how SMA Support UK made a difference when their son Henry was diagnosed with SMA. They are now busy raising funds so other families can receive the same support.

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Access to nusinersen in the UK

30 May 2017 / Posted in: Research

We are working with Muscular Dystrophy UK, the SMA Trust and TreatSMA. Read about our focus now and how you can help.

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Cytokinetics Drug Awarded Orphan Drug Designation in the US

25 May 2017 / Posted in: Research

Cytokinetics has announced that the US Food and Drug Administration (FDA) has granted Orphan Drug Designation to its compound CK-2127107 for the potential treatment of SMA.

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Read the Latest Responses from Biogen about Nusinersen in the UK

16 May 2017 / Posted in: Research

Biogen responds to NHS England's requests about the UK EAP for infants with SMA Type 1; they also tell us when they hope to hear from NICE.

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Biogen Advises on Future Access Position for Children Enrolled in an SMA Type 1 EAP

11 May 2017 / Posted in: Research

We asked about the position in the UK and overseas.

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Update on NHS England's position re EAP for SMA Type 1

10 May 2017 / Posted in: Research

You can now read the latest information about NHS England’s position on considering the possibility of supporting the costs of delivering the EAP in England. We now have authority to share information from the meeting we attended on 25th April with the NHS England Specialised Commissioning team.

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SMA Type 3 and Me - New Book Publication

09 May 2017 / Posted in: Information & Support

Explaining SMA and why it happens is quite difficult. This book is aimed at children aged 8 and over but it can also be read to a younger child, be used in schools or when explaining SMA to friends.

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