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Latest News: Information & Support

Our Survey: So What Did You Tell Us?

19 July 2017 / Posted in: Information & Support

Thank you to those of you who completed our survey and told us what you think of our current services and gave us your ideas about our future direction. Here are the results...

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Rare Disease UK Announces New Project

26 June 2017 / Posted in: Information & Support

Rare Disease UK will be coordinating a new project that aims to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition.

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The 'Secret Life Of Us' Campaign

23 June 2017 / Posted in: Information & Support

The Disabled Children’s Partnership are launching the 'Secret Life of Us' campaign on 28th June, joining forces to fight for better health and social care for disabled children, young people and their families in England.

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Universal Credit

08 June 2017 / Posted in: Information & Support

Contact a Family launched their Universal Credit #KnowYourClaim campaign on 10th May. This was to make sure people know about Universal Credit and how it might affect families.

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Care Quality Commission Seeking Responses To 'Share Your Experience' Initiative

07 June 2017 / Posted in: Information & Support

They want to hear from people living with a disability on their experience of using the services that they regulate; hospitals, GP surgeries, care homes, care at home services, for example.

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SMA Type 3 and Me - New Book Publication

09 May 2017 / Posted in: Information & Support

Explaining SMA and why it happens is quite difficult. This book is aimed at children aged 8 and over but it can also be read to a younger child, be used in schools or when explaining SMA to friends.

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Children's Hospice Week 22nd-28th May 2017

04 May 2017 / Posted in: Information & Support

This year, Together for Short Lives will be turning up the volume on children’s palliative care to raise awareness. Find out how you can get involved.

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Wanted - Your Feedback!

27 April 2017 / Posted in: Information & Support

​Calling all individuals, families and professionals. Please tell us what you think about current services and give your thoughts on our future direction in our survey. Closing date for responses is 5pm on Friday 26th May 2017.

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SMARD Route Map Published

28 March 2017 / Posted in: Information & Support

This resource gives a summary of support services and resources available in the UK for families. It is based on the issues, concerns and personal experience of parents with contributions from health and social care professionals.

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Housing for Disabled People: Have Your Say

09 March 2017 / Posted in: Information & Support

The Equality and Human Rights Commision want to hear from disabled people to understand whether the availability of accessible and adaptable housing, and the support services around it, fulfils disabled people’s rights to live independently. Closing date is Tuesday 18 April 2017.

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