Latest News: Support

New Survey Launched to Understand Activity Needs of Disabled Children

16 January 2020 / Posted in: Information, Support

The ukactive Research Institute has announced a three-year research project with national disability charity, Sense, to understand better the needs of parents and families of disabled children. Survey closes 15th March.

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From April 2020: Free Hospital Parking for Some Patients, Staff and Carers

10 January 2020 / Posted in: Information, Support

Disabled people, frequent outpatient attenders, parents of sick children staying overnight and staff working night shifts, will not have to pay for NHS car parking from April 2020.

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Petition On Social Care Reform

20 December 2019 / Posted in: Information, Support

The Neurological Alliance has launched a joint campaign, with Change.org and Epilepsy Action, to raise the profile of people with neurological conditions in the conversation around social care. Find out more and sign the petition.

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New SMA Voices: Gary Shares His Experiences

18 December 2019 / Posted in: Information, Support

In this video, Gary looks back at his childhood and forward to present day, and shares his experiences of what it’s like to live with Spinal Muscular Atrophy.

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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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