24 July 2018 / Posted in: 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.
23 July 2018 / Posted in: Information
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.
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.
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.
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
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.
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
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.
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.
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.