Latest News: Information
11 December 2019 / Posted in: Information, Support
Our office is closed from 1pm on Friday 20th December 2019. We re-open on Thursday 2nd January 2020 at 9.00am. Here are links to where you can access support and information about SMA during this time.
10 December 2019 / Posted in: Information, Support
Called 'This Is Me', the project provides an opportunity for young people with life-limiting conditions in the UK to express themselves through the creative arts. Submissions deadline is 20th January 2020.
03 December 2019 / Posted in: Information, Support
The Neurological Alliance are asking parliamentary candidates to take the #NeuroPledge2019. It commits them to campaigning for improvements for people with neurological conditions, if they become an MP. Find out how you can get involved and write to your prospective MP.
28 November 2019 / Posted in: Information, Support
The COordiNated Care Of Rare Diseases (CONCORD) research study is currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via their online survey. Survey closes Sunday 8th December.
20 November 2019 / Posted in: Information, Support
There are 1.1 million disabled children in the UK, but the system designed to support them and their families is failing. The Disabled Children's Partnership want to hear from all parties and candidates, as we approach the general election, as to what they will do to mend the system. Find out how you can get involved.
19 November 2019 / Posted in: Information, Support
11-year-old Jane Velkovski from North Macedonia, who has SMA, will be joining UNICEF and speaking at a global summit at the United Nations Headquarters in New York. Children and young people will be there leading a call to action to protect and promote child rights.
15 November 2019 / Posted in: Information, Support
It has been confirmed that CCGs are now able to set the time that individuals have to challenge an eligibility decision for NHS Continuing Healthcare, leading to a 'postcode lottery'.
14 November 2019 / Posted in: Information, Treatments & Research, Support
SMA UK, MDUK and TreatSMA have launched this survey for the paediatric SMA Community to gather information about people’s experiences of trying to access nusinersen (Spinraza). Closing date is Sunday 1st December. An adult survey will follow in due course.
30 October 2019 / Posted in: Information, Support
The Minister for rare disease at the Department of Health and Social Care, Baroness Blackwood, has announced a national conversation to understand how we can better care for people who are living with a rare disease. Survey closes 29th November.
25 October 2019 / Posted in: Information, Treatments & Research, Support
Genetic Alliance UK have launched this campaign to improve access to potentially life-changing treatments for people affected by rare diseases (including SMA). We're backing their campaign and calling for #ActionForAccess. Find out how you can get involved too.