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Latest News: Information & Support

Updated Information Sheet

06 July 2016 / Posted in: Information & Support

We have updated our information sheet: 'Leisure Activities for Children and Young People with Spinal Muscular Atrophy'. This lists some of the many organisations that enable people with disabilities, including SMA, to participate in leisure activities.

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SMA Medical Guidance For DWP Staff

05 July 2016 / Posted in: Information & Support

We have been in contact with the DWP to ask what information they use to make decisions for Disability Living Allowance (DLA) and for Attendance Allowance (AA).

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Kidz to Adultz Wales

20 June 2016 / Posted in: Information & Support

One of the largest, free UK exhibitions dedicated to children & young adults with disabilities and additional needs, their families and the professionals who support them. Taking place Thursday 7th July.

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Campaign To Increase Carer’s Allowance Earnings Threshold

09 June 2016 / Posted in: Information & Support

Contact a Family is asking people to sign an open letter calling on the government to make this increase to stop carers losing out on support.

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Focus on Disability Benefits

08 June 2016 / Posted in: Information & Support

This hard-hitting report, just published by Muscular Dystrophy UK, warns that welfare assessments are thoroughly inadequate for people with progressive conditions.

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Scoliosis Surgery Survey

03 June 2016 / Posted in: Information & Support

As part of Ben Owen's A Levels, he is doing a project on scoliosis surgery and how it improves/worsens quality of life. He is looking for anyone who has ever had scoliosis surgery to complete his survey - closing date is 31st August 2016.

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Events Taking Place In June Across The UK

03 June 2016 / Posted in: Information & Support

There are a number of information, support and social events taking place across the UK during June including: Disability Adventure Weekend, RISE 4 Disability (event for healthcare professionals) and the Lions FunFest.

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Survey of your views on the ethical issues raised by non-invasive prenatal testing (NIPT)

01 June 2016 / Posted in: Information & Support

The Nuffield Council on Bioethics is seeking people’s views and has also called for evidence. The survey is open now and closes on 25th July.

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How Can The Government Improve Help For Carers?

01 June 2016 / Posted in: Information & Support

The Department of Health wants to hear from anyone who cares for a family member or friend, anyone who has someone to care for them and from professionals. This is to help them develop a new strategy.

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Kidz to Adultz South

25 May 2016 / Posted in: Information & Support

One of the largest, free UK exhibitions dedicated to children & young adults with disabilities and additional needs, their families and the professionals who support them. Taking place on Thursday 9th June 2016.

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