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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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Young People Wanted to get Involved in DR UK Research

25 June 2018 / Posted in: Information

Disability Rights UK is looking for disabled young people aged 12-18 years to become members of the project advisory board for a research project looking at attitudes towards disability and disabled people amongst their peers.

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Thank you for supporting Marathon in May for SMA Thank you for supporting Marathon in May for SMA

21 June 2018 / Posted in: Help Us

We would like to say a huge Thank You to everyone who has supported the very first Marathon in May for SMA.

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PTC Therapeutics Present Interim Data from FIREFISH Clinical Trial

21 June 2018 / Posted in: Treatments & Research

PTC Therapeutics recently presented preliminary data from the FIREFISH Phase II clinical trial of their splice-modifying drug, RG7916, at the 2018 Cure SMA conference in Dallas, USA.

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