Contact Survey: Share your Experience of Access to Covid-19 Vaccines
10 March 2021 / Posted in: Information, Support
Contact is building a picture of access to Covid-19 vaccines for unpaid carers, disabled young people and shielding children. Please consider taking 5 minutes to complete their short survey to help Contact push for further access to Covid-19 vaccines. The survey closes at 9am on Monday 15th March.
Thank You
09 March 2021 / Posted in: Information, Treatments & Research, Support
Following yesterday's announcements, SMA UK would like to thank all those involved.
SMA PhD Partnership - SMA UK and MDUK
09 March 2021 / Posted in: Information, Treatments & Research
SMA UK and MDUK are delighted to announce our SMA PhD Partnership! Applications are now open for one 4-year PhD studentship in 5q SMA research as part of Muscular Dystrophy UK’s Grant Round 2021, and close at 5pm on Tuesday 1st June 2021.
NHS England Announces Access to Zolgensma for Eligible Children who have SMA Type 1
08 March 2021 / Posted in: Treatments & Research
NHS England’s announcement of this landmark agreement is positive news for parents of some children who have SMA Type 1 who may now be eligible for access to this one-time gene therapy.
SMA Gene Therapy Treatment Zolgensma Accepted for Restricted Use within NHS Scotland
08 March 2021 / Posted in: Treatments & Research
The Scottish Medicines Consortium has just announced the positive news that it has accepted Zolgensma for restricted use for SMA Type 1 within NHS Scotland. This follows NHS England’s and NICE’s announcements earlier today. Read further details, including about eligibility.
NICE Releases its Evaluation Consultation Document (ECD) on Zolgensma in England
08 March 2021 / Posted in: Treatments & Research
NICE has backed NHS England’s announcement this morning to fast-track the introduction of this innovative gene therapy so that it becomes available in England before NICE publishes its final guidance. So that NICE can complete its appraisal of the treatment, it’s ECD is now available on their website and is open for anyone to comment by the closing date of 5pm Tuesday 6th April 2021.
New £30m Fund to Install Changing Places toilets in Existing Buildings across England
05 March 2021 / Posted in: Information, Support
Local authorities will soon be invited to ‘opt in’ to receive a proportion of the £30m funding, based on need, to install facilities in their communities. The move follows changes to statutory guidance that came into effect from January 2021 that made the provision of Changing Places toilets compulsory in certain new buildings.
We've Launched a Podcast!
01 March 2021 / Posted in: Information, Support
We're excited to have launched our brand-new SMA UK podcast, with people affected by SMA sharing their personal experiences, tips and advice on all things 'Living With SMA'. The first episode - 'Mental Health and Wellbeing during COVID-19' – is available to listen to now. Follow and subscribe today!
March: Back to School Information
01 March 2021 / Posted in: Information, Support
Following the publishing of the Government's route out of lockdown, it was announced that children would start to return to school from the 8th March (apart from those who are clinically extremely vulnerable). We hope the information here may help with any questions you have.
Virtual Event - Respiratory Management of Neuromuscular Patients in the Era of New Treatments
26 February 2021 / Posted in: Information, Support
This one day virtual symposium, for professionals and parents / families of children, is taking place on 28th May with keynote speaker Professor Anita Simonds (consultant in respiratory and sleep medicine). Places are limited so book your tickets asap.
