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Pancake Day for SMA Support UK! Pancake Day for SMA Support UK!

02 March 2017 / Posted in: Help Us

A Pancake Day recently held by Amy Cameron raised a whopping £245! We would like to say a big thank you to Amy and all her family and friends who got involved.

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SMA Support UK and the SMA Trust at Rare Disease Day 2017

02 March 2017 / Posted in: Research

The charities shared a stall at Royal Holloway’s annual Rare Disease Day event on February 24th.

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Nuffield Council on Bioethics: NIPT Report

01 March 2017 / Posted in: Information & Support

The Nuffield Council on Bioethics today has launched its new report 'Non-invasive prenatal testing: ethical issues' which explores the ethical issues raised by non-invasive prenatal testing (NIPT).

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Maximising Your Income

13 February 2017 / Posted in: Information & Support

Having SMA, or having a child with SMA, can have financial implications so it is important to ensure you are receiving all the benefits and services you are entitled to. There are several organisations that may be able to help with this.

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Campaign To Improve School Transport

10 February 2017 / Posted in: Information & Support

Contact a Family have launched their biggest inquiry into school transport for disabled children, and they want to hear from you. Take part in their survey to share your experiences, both positive and negative.

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New SMA Voices: Hello From Charlie

10 February 2017 / Posted in: Information & Support

Charlie contacted us wanting to become more involved with SMA Support UK and offering to volunteer his services. We suggested he might like to start by sharing some of his many and varied experiences.

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New European Pivotal Study Announced by AveXis

09 February 2017 / Posted in: Research

AveXis has announced details of a European pivotal trial of their gene therapy drug for SMA, AVXS-101.

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The National Key Scheme - Opening Doors to Independent Living

09 February 2017 / Posted in: Information & Support

Be in control and buy a Radar Key from Disability Rights UK for priority access to over 9000 accessible toilets in the UK.

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Disability Rights UK Short Seminars

07 February 2017 / Posted in: Information & Support

Do you employ a personal care assistant, or know someone who does? These short seminars will explain the law surrounding employing a personal care assistant.

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Katherine's Fundraising Story Katherine's Fundraising Story

02 February 2017 / Posted in: Help Us

Katherine shares memories of her niece Amber, who had SMA Type 1 and sadly passed away, and why she was inspired to raise funds for SMA Support UK.

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