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Latest News: Information & Support

Transition to Adult Services

11 January 2018 / Posted in: Information & Support

Together for Short Lives has produced this factsheet to help parents think about the different elements of transition that need to be planned for and to provide tips to help the process feel as smooth as possible.

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Education, Health and Care Plans: Examples of Good Practice

02 January 2018 / Posted in: Information & Support

These resources have been produced to help practitioners write good quality EHC plans. The Council for Disabled Children suggests they may also be useful for parents, children and young people and those supporting them.

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Invitation to parents/main carers in the UK whose children have received nuisnersen treatment to voice your views

19 December 2017 / Posted in: Information & Support, Research

Wherever you live in the UK, we would like to be able to include your views in our Patient Group Submission to the Scottish Medicines Consortium.

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Invitation to the Scottish SMA Community to voice your views

19 December 2017 / Posted in: Information & Support, Research

The Scottish Medicines Consortium (SMC) will shortly be assessing the treatment nusinersen (Spinraza) to decide whether it can be used by NHS Scotland for the treatment of SMA Types 1, 2 and 3. We need your help with this.

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Petition: Supermarkets To Commit To Providing Changing Places Toilets In Stores Within 18 Months

29 November 2017 / Posted in: Information & Support

A petition has been set up calling for the 6 main supermarket chains to commit to providing Changing Places toilets in their stores within the next 18 months. Please consider signing this petition.

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Disability Living Allowance Eligibility

22 November 2017 / Posted in: Information & Support

Contact's research has shown that there is still a lot of confusion about who is entitled to what. Here, they bust some of the myths surrounding the Disability Living Allowance (DLA).

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The Emotional Impact of Living with a Rare or Undiagnosed Condition

16 November 2017 / Posted in: Information & Support

Do you have a rare or undiagnosed condition? OR are you a parent or carer of someone with a rare or undiagnosed condition? Complete Rare Disease UK's survey to share your thoughts and experiences.

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Raising Awareness: Baby Loss Awareness Week

19 October 2017 / Posted in: Information & Support

A big thank you to everyone who got involved with raising awareness during Baby Loss Awareness Week. Included in the week was a reception at Westminster and discussions around the Baby Loss debate and National Bereavement Care Pathway.

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Disabled Children's Partnership Survey

19 October 2017 / Posted in: Information & Support

The Minister for Disabled People has asked the Disabled Children’s Partnership to help her gather the views of disabled children and young people. Take the survey here.

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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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