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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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Children's Hospice Week 22nd-28th May 2017

04 May 2017 / Posted in: Information & Support

This year, Together for Short Lives will be turning up the volume on children’s palliative care to raise awareness. Find out how you can get involved.

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SMA Voices: Maddison SMA Voices: Maddison

03 May 2017 / Posted in: Our Community

Lidia, Maddison's mum, shares their family's thoughts and experiences in this SMA Voices piece about Maddison who was diagnosed with SMARD at 9 months and is now 8 years old.

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Wanted - Your Feedback!

27 April 2017 / Posted in: Information & Support

​Calling all individuals, families and professionals. Please tell us what you think about current services and give your thoughts on our future direction in our survey. Closing date for responses is 5pm on Friday 26th May 2017.

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Cytokinetics Initiates Second Cohort in Phase 2 Trial of CK-2127107

26 April 2017 / Posted in: Research

Cytokinetics has announced that it has initiated enrolment of a second cohort of SMA patients with SMA Types 2, 3 or 4 in their phase 2 clinical trial of CK-2127107, in North America.

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Update on CHERISH and NURTURE clinical trials of Spinraza

25 April 2017 / Posted in: Research

Biogen and Ionis Pharmaceutical have released information on the CHERISH and NURTURE clinical trials of their gene therapy drug, Spinraza (formerly nusinersen).

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EMA recommends marketing authorisation for nusinersen

21 April 2017 / Posted in: Research

The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has recommended the marketing approval of nusinersen.

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New Clinical Care Research Article: Scoliosis in SMA

18 April 2017 / Posted in: Research

This new research article looks at recent research into different aspects of spinal surgery, in the treatment of scoliosis in Spinal Muscular Atrophy.

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