13 November 2018 / Posted in: Treatments & Research
Last week, along with MDUK, we were patient reps at NICE’s scoping meeting for AVXS-101 for SMA Type 1. We also attended Genetic Alliance UK’s workshop for rare disease groups discussing a Patient Charter for Newborn Screening in the UK.
12 November 2018 / Posted in: Treatments & Research
This latest SMA Community update from NICE doesn't give a decision yet but states that talks are still progressing.
01 November 2018 / Posted in: Information, Support
The charity Turn2Us have written an article explaining how people claiming Universal Credit can get help through Universal Support which enables them to make a claim and manage ongoing payments.
01 November 2018 / Posted in: Treatments & Research
Despite our urgent request, Biogen has not extended the cut off for this programme to 1st December. It ends now for any newly diagnosed infants. Read their community statement here.
26 October 2018 / Posted in: Treatments & Research
Thank you to the patient and clinical experts who strongly advocated for access to nusinersen at NICE’s committee meeting this week; to clinicians, families and adults who: expressed their views in their submissions to NICE; wrote letters to MPs, NICE, NHS England and Biogen; were there on the day.
25 October 2018 / Posted in: Help Us
As the merger has now taken place, we have updated our social media pages to 'SMA UK'. For anyone who was following The SMA Trust, please now make sure you are following SMA UK's pages.
24 October 2018 / Posted in: Information
An A-Level student is running this survey to find out to what extent physiotherapy improves the quality of life for those with SMA compared to other care pathways.
24 October 2018 / Posted in: Support
If you have attended one of our Autumn/Winter Social Events so far we hope you had an enjoyable day. We would like your feedback and have put together a short survey to gather your views.
23 October 2018 / Posted in: Information
We support this campaign which shows there is compelling evidence that the services and support that children and young people rely on are at breaking point.
22 October 2018 / Posted in: Information
Project Move is an exciting joint venture between Alder Hey and The University of Liverpool looking at redesigning and modernising children’s powered wheelchairs. Find out how you could get involved by attending their event.