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Call for End to Postcode Lottery of Care for Bereaved Parents

09 October 2017 / Posted in: Information & Support

A coalition of more than 40 charities, including SMA Support UK, is today urging an end to the postcode lottery in bereavement care for parents.

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Campaign to Save Local Short Breaks Services

04 October 2017 / Posted in: Information & Support

Add your name to the DCP's letter calling on the Government to review the funding and availability of short breaks services.

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UK SMA Awareness Day 2017 - The Results! UK SMA Awareness Day 2017 - The Results!

02 October 2017 / Posted in: Our Community

Thank you to everyone who helped to make this Awareness Day campaign our biggest yet! Read the facts and figures here.

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NHS England replies to the joint clinicians/charities letter

29 September 2017 / Posted in: Research

The request to include those with more than two SMN2 copies and over 7 months of age in the SMA Type 1 nusinersen EAP is not yet successful. We are still waiting to hear from NICE about next steps.

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Novartis Releases Clinical Trial Update

27 September 2017 / Posted in: Research

Novartis has released the following community update for the LMI070 (branaplam) clinical trial.

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Roche’s SUNFISH study community update

19 September 2017 / Posted in: Research

Roche have provided an update on clinical trials of their SMN2 splice-modifying drug RG7916

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Revisiting the Consensus Statement for Standards of Care in SMA - Full Report

30 August 2017 / Posted in: Research

You can now read the full workshop report written by the clinical researchers and patient representatives from Europe and the US who met last year.

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Muscular Dystrophy UK's 'Moving Up' Employability Project

29 August 2017 / Posted in: Information & Support

Are you a young disabled person living in London and looking for employment support or an organisation looking to broaden your employment opportunities? Find out more about MDUK's employability project here.

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Letter to NHS England Requesting Review of EAP Type 1 Interim Policy Criteria

24 August 2017 / Posted in: Research

Sent on 23rd August from clinicians and advocacy groups, this asks for the age limit and SMN2 copy number restrictions on potential access to be removed.

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Help Genetic Alliance UK Produce the Insurance Information you Need

21 August 2017 / Posted in: Information & Support

Genetic Alliance UK is now running a survey to understand patients' experiences including any challenges they face, or concerns they have, when applying for insurance. This information will help them to update the resources available on their website.

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