Latest News: Information

Information and Support over the Christmas Break

11 December 2019 / Posted in: Information, Support

Our office is closed from 1pm on Friday 20th December 2019. We re-open on Thursday 2nd January 2020 at 9.00am. Here are links to where you can access support and information about SMA during this time.

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Together for Short Lives Launches Youth-Led Creative Artwork Project

10 December 2019 / Posted in: Information, Support

Called 'This Is Me', the project provides an opportunity for young people with life-limiting conditions in the UK to express themselves through the creative arts. Submissions deadline is 20th January 2020.

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Support the #NeuroPledge2019

03 December 2019 / Posted in: Information, Support

The Neurological Alliance are asking parliamentary candidates to take the #NeuroPledge2019. It commits them to campaigning for improvements for people with neurological conditions, if they become an MP. Find out how you can get involved and write to your prospective MP.

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CONCORD Survey about the Coordination of Care for Rare Conditions

28 November 2019 / Posted in: Information, Support

The COordiNated Care Of Rare Diseases (CONCORD) research study is currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via their online survey. Survey closes Sunday 8th December.

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#VoteSEND - Make Disabled Children a Priority in the General Election

20 November 2019 / Posted in: Information, Support

There are 1.1 million disabled children in the UK, but the system designed to support them and their families is failing. The Disabled Children's Partnership want to hear from all parties and candidates, as we approach the general election, as to what they will do to mend the system. Find out how you can get involved.

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World Children's Day - Jane Velkovski

19 November 2019 / Posted in: Information, Support

11-year-old Jane Velkovski from North Macedonia, who has SMA, will be joining UNICEF and speaking at a global summit at the United Nations Headquarters in New York. Children and young people will be there leading a call to action to protect and promote child rights.

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Changes to Deadlines and Timescales of CHC Appeals Processes

15 November 2019 / Posted in: Information, Support

It has been confirmed that CCGs are now able to set the time that individuals have to challenge an eligibility decision for NHS Continuing Healthcare, leading to a 'postcode lottery'.

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Survey About What Progress There Has Been With Children's Access To Nusinersen In The UK

14 November 2019 / Posted in: Information, Treatments & Research, Support

SMA UK, MDUK and TreatSMA have launched this survey for the paediatric SMA Community to gather information about people’s experiences of trying to access nusinersen (Spinraza). Closing date is Sunday 1st December. An adult survey will follow in due course.

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New Survey: Your Views On Living With A Rare Disease

30 October 2019 / Posted in: Information, Support

The Minister for rare disease at the Department of Health and Social Care, Baroness Blackwood, has announced a national conversation to understand how we can better care for people who are living with a rare disease. Survey closes 29th November.

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Action For Access

25 October 2019 / Posted in: Information, Treatments & Research, Support

Genetic Alliance UK have launched this campaign to improve access to potentially life-changing treatments for people affected by rare diseases (including SMA). We're backing their campaign and calling for #ActionForAccess. Find out how you can get involved too.

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