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Biogen SMA Community Update to SMA Europe

17 November 2017 / Posted in: Research

Biogen’s SMA Community Update to SMA Europe covers recent trial results as well as what’s happening in terms of access in Europe and worldwide.

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The Emotional Impact of Living with a Rare or Undiagnosed Condition

16 November 2017 / Posted in: Information & Support

Do you have a rare or undiagnosed condition? OR are you a parent or carer of someone with a rare or undiagnosed condition? Complete Rare Disease UK's survey to share your thoughts and experiences.

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Updates on nusinersen/Spinraza Trials at the World Muscle Society Meeting

15 November 2017 / Posted in: Research

The 22nd International Annual Congress of the World Muscle Society (WMS) was held October 3rd-7th 2017 in Saint Malo, France. While SMA Support UK did not attend, Biogen have uploaded three posters to their repository that were presented at the meeting.

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Join EHRC's Disability Advisory Committee Join EHRC's Disability Advisory Committee

09 November 2017 / Posted in: Our Community

They are looking for high-performing individuals with disability expertise to join their new Disability Advisory Committee. Applications close 24th November.

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Inspirations Autumn 2017 Inspirations Autumn 2017

09 November 2017 / Posted in: Our Community

Follow the link to download the Autumn 2017 edition of our 'Inspirations' newsletter, and the Christmas insert.

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Clinicians and Charities Make Further Appeal to NHS England to Widen Scope of SMA Type 1 Nusinersen EAP

30 October 2017 / Posted in: Research

SMA Support UK has backed the call led by Professor Francesco Muntoni not to limit the treatment only to infants with two SMN2 copy numbers.

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APPG Agrees Access To New Medicines For Rare Conditions Isn't Working

26 October 2017 / Posted in: Research

The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions has asked Genetic Alliance UK to lead work to propose a solution.

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Raising Awareness: Baby Loss Awareness Week

19 October 2017 / Posted in: Information & Support

A big thank you to everyone who got involved with raising awareness during Baby Loss Awareness Week. Included in the week was a reception at Westminster and discussions around the Baby Loss debate and National Bereavement Care Pathway.

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Disabled Children's Partnership Survey

19 October 2017 / Posted in: Information & Support

The Minister for Disabled People has asked the Disabled Children’s Partnership to help her gather the views of disabled children and young people. Take the survey here.

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What Is Happening About Access To Nusinersen?

18 October 2017 / Posted in: Research

We share the frustrations of the SMA Community that there has still been no announcement from NICE about whether it will assess the treatment for continued and wider provision of nusinersen by the NHS. Here is an update of what SMA Support UK is doing.

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