09 October 2017 / Posted in: Information & Support
A coalition of more than 40 charities, including SMA Support UK, is today urging an end to the postcode lottery in bereavement care for parents.
04 October 2017 / Posted in: Information & Support
Add your name to the DCP's letter calling on the Government to review the funding and availability of short breaks services.
02 October 2017 / Posted in: Our Community
Thank you to everyone who helped to make this Awareness Day campaign our biggest yet! Read the facts and figures here.
29 September 2017 / Posted in: Research
The request to include those with more than two SMN2 copies and over 7 months of age in the SMA Type 1 nusinersen EAP is not yet successful. We are still waiting to hear from NICE about next steps.
27 September 2017 / Posted in: Research
Novartis has released the following community update for the LMI070 (branaplam) clinical trial.
19 September 2017 / Posted in: Research
Roche have provided an update on clinical trials of their SMN2 splice-modifying drug RG7916
30 August 2017 / Posted in: Research
You can now read the full workshop report written by the clinical researchers and patient representatives from Europe and the US who met last year.
29 August 2017 / Posted in: Information & Support
Are you a young disabled person living in London and looking for employment support or an organisation looking to broaden your employment opportunities? Find out more about MDUK's employability project here.
24 August 2017 / Posted in: Research
Sent on 23rd August from clinicians and advocacy groups, this asks for the age limit and SMN2 copy number restrictions on potential access to be removed.
21 August 2017 / Posted in: Information & Support
Genetic Alliance UK is now running a survey to understand patients' experiences including any challenges they face, or concerns they have, when applying for insurance. This information will help them to update the resources available on their website.