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Petition Launched to Fund Lifeline Care for Seriously Ill Children

24 July 2018 / Posted in: Information & Support

Together for Short Lives has launched an online petition calling on the Prime Minister to use some of the recent 3.4% NHS funding boost to fund lifeline care for seriously ill children.

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Coffee and Cake Day Coffee and Cake Day

23 July 2018 / Posted in: Help Us

Our Coffee & Cake packs include recipes, inspirational stories, posters, balloons and bunting to help make your event a success. Order yours for free now!

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New Report By Working Families

23 July 2018 / Posted in: Information & Support

Combining work and family life is a complex juggling act for all parents. But for parents of disabled children, the challenges are greater still. This new report highlights how parents of disabled children are struggling to hold down vital jobs.

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Make a Regular Donation Make a Regular Donation

22 July 2018 / Posted in: Help Us

Our supporters’ generosity is the reason we can continue supporting individuals and families affected by SMA and raise awareness of the condition.

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London to Brighton Cycle London to Brighton Cycle

21 July 2018 / Posted in: Help Us

There is still time to register and join us for this iconic cycle ride to help raise valuable funds.

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The DSA Claim It! Campaign

18 July 2018 / Posted in: Information & Support

This Campaign, from Disability Rights UK, offers advice and information about Disabled Students' Allowances (DSAs) and other university-led adjustments.

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EMPoWER: Early Mobility and Powered Wheelchair Evidence Review

05 July 2018 / Posted in: Information & Support, Research

We are pleased to be involved with a new project to estimate the costs and benefits of providing young disabled children under 5 years with powered mobility aids

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Map of progress towards global access to nusinersen

05 July 2018 / Posted in: Research

We have received an updated map from Biogen which shows the latest status of global access to nusinersen.

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The Disabled Children’s Partnership’s (DCP) Survey of Children’s Services Reveals a Dismal Picture

05 July 2018 / Posted in: Information & Support

Declining quality and more cuts to come. Survey results showed high percentages of families think the quality of health and social care services have got worse over the past few years and many are aware of specific local plans to cut services further. The DCP is calling for ministerial action

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Virtual Reality Game Experience - Research Project

28 June 2018 / Posted in: Information & Support

Are you a deaf or disabled person and want to help create a VR experience? Accentuate is looking for your ideas to help shape a digital experience which will explore choice and value, in relation to genetic screening.

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