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Views Sought On The Use Of Non-Invasive Prenatal Testing (NIPT)

06 October 2016 / Posted in: Research

The Nuffield Council on Bioethics is thinking about the ethical issues raised by NIPT and would like to talk to people over 18 who have SMA about their views on current and future uses of NIPT.

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Petition To Change Law

28 September 2016 / Posted in: Information & Support

Steven, who has SMA Type 2 and is currently abroad as part of an Erasmus programme, has set up a petition as the DWP has told him that after 13 weeks abroad he will no longer be entitled to his motability vehicle.

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Roche Initiate Phase II Trial of RG7916

27 September 2016 / Posted in: Research

Roche have announced that they are to begin recruiting SMA patients in two parallel Phase II clinical trials of their second splice-modifying drug, RG7916 (also known as RO7034067).

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Genetic Alliance UK launch the Hidden Costs Feasibility Study Report

27 September 2016 / Posted in: Information & Support

Genetic Alliance UK’s ‘Hidden Costs’ report reveals that individuals and families affected by rare diseases face substantial financial and psychosocial costs as a result of poorly coordinated care in the UK.

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Biogen and Ionis update on New Drug Application for Nusinersen

27 September 2016 / Posted in: Research

In response to requests for information, this update from Biogen and Ionis is for all in the SMA community.

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Inspirations Autumn 2016 Inspirations Autumn 2016

23 September 2016 / Posted in: Our Community

Follow the link to download the latest copy of our Inspirations newsletter for Autumn 2016.

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Leaflet Receives Commended Certificate

23 September 2016 / Posted in: Information & Support

SMA Support UK has received a commended certificate in the 2016 British Medical Association (BMA) Patient Information Awards for our leaflet Future Options in Pregnancy.

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Molecular “Homing Devices” Drastically Improve SMA Therapy

22 September 2016 / Posted in: Research

Antisense oligonucleotide technology holds great promise for the treatment of SMA.

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Supporter of the Month: September 2016 Supporter of the Month: September 2016

21 September 2016 / Posted in: Our Community

This month we would like to celebrate the fundraising achievements of Ernie and Joan Sedgwick.

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New SMA Voices: Finlay

21 September 2016 / Posted in: Information & Support

In this SMA Voices, Finlay's parents share their thoughts, feelings and experiences about their son who had SMA Type 1 and sadly died last year.

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