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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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The DSA Claim It! Campaign

18 July 2018 / Posted in: 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, Treatments & 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: Treatments & 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

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

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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Roche’s Sunfish Clinical Trial – why didn’t it happen here/what about access to future trials?

28 June 2018 / Posted in: Treatments & Research

We asked GOSH if they could throw any light on this and what assurances they could give that the UK won’t miss out in the future. Also, we checked what actions anyone interested in being considered for a clinical trial should take.

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Consultation About Screening For SMA

27 June 2018 / Posted in: Treatments & Research

The National Screening Committee (NSC) has invited us to give comments and feedback on its June 2018 evidence review. We will be collating views on this.

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NICE Committee Meeting

27 June 2018 / Posted in: Treatments & Research

Today, we are at the NICE Committee Meeting in Manchester which is considering whether to recommend access to nusinersen; we will know the outcome in 3 – 4 weeks’ time. Thanks to the other two Patient Representatives who are also attending.

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Speaking Up For Provision Of Cough Assist Machines

26 June 2018 / Posted in: Support

A group of three West Midlands CCGs are reviewing their policy on cough assists, which could result in patients being denied this vital piece of equipment. We have added our voice to protest against this.

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