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Latest News: Information & Support

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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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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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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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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Campaign to Save Local Short Breaks Services

04 October 2017 / Posted in: Information & Support

Add your name to the DCP's letter calling on the Government to review the funding and availability of short breaks services.

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Muscular Dystrophy UK's 'Moving Up' Employability Project

29 August 2017 / Posted in: Information & Support

Are you a young disabled person living in London and looking for employment support or an organisation looking to broaden your employment opportunities? Find out more about MDUK's employability project here.

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Help Genetic Alliance UK Produce the Insurance Information you Need

21 August 2017 / Posted in: Information & Support

Genetic Alliance UK is now running a survey to understand patients' experiences including any challenges they face, or concerns they have, when applying for insurance. This information will help them to update the resources available on their website.

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The Disabled Children's Partnership: Top Tips for the Summer Holidays

16 August 2017 / Posted in: Information & Support

The Disabled Children's Partnership recognise what holidays are like for disabled children and young people, and their families. Here, they list some of their top tips.

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New Campaign: Tell the PM to Stop Universal Credit Cuts

02 August 2017 / Posted in: Information & Support

Contact a Family are concerned that around 100,000 parents with disabled children are at risk of being worse off on Universal Credit. Sign their petition to the prime minister to reverse cuts to child disability payments under Universal Credit.

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The One Show Making Film about the Issues Disabled People Face when using Public Transport

19 July 2017 / Posted in: Information & Support

They are looking for people to record short videos on their phones/cameras when they genuinely encounter a problem when using public transport.

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