24 July 2018 / Posted in: Treatments & Research
During the recent Cure SMA researcher meeting in USA, Roche shared progress details of the risdiplam programme which you can read more about here. The update also includes an acknowledgement of the disappointment that UK SUNFISH trial sites were not initiated in time to allow UK patients to take part.
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: 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!
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.