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Latest News: Information & Support

Research About Experiences of Accessibility in Public Space and Transport

22 November 2016 / Posted in: Information & Support

Sunil Rodger, a postgraduate at Newcastle University, is seeking power wheelchair users to take part in research about their experiences of accessibility in public space and transport.

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New SMA Voices: Martyn

04 November 2016 / Posted in: Information & Support

Martyn and his fiancé, Kasia, recently travelled to Devon to try an accessible horse and carriage ride at the Calvert Trust, Exmoor. Find out how they got on.

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Disability North’s International Day of Disabled People 2016

26 October 2016 / Posted in: Information & Support

Each year, Disability North holds an event to celebrate the United Nation’s International Day of Disabled People. The event is a celebration of the services, facilities and projects in the region that promote inclusion and access for disabled people.

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EURORDIS Awards 2017

21 October 2016 / Posted in: Information & Support

EURORDIS – who represent rare disease patient organisations – have opened the nominations for the EURORDIS Awards 2017.

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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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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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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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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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The Implications Of Genetic Screening?

20 September 2016 / Posted in: Information & Support

In our latest SMA Voices story, Esther Fox, artist, and Felicity Boardman, researcher, ask all of us to consider the wide ranging implications that pre-natal genetic screening would have if it were more widely available.

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ENDEAR clinical trial update

16 September 2016 / Posted in: Information & Support, Research

Principle Investigators in London and Newcastle have released this statement.

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