SMA related research
The pages in this section will provide you with information on the current SMA related research.
This page is to update our patients and their families/carers on the current SMA research taking place worldwide; to provide links to relevant, important websites; in the hope that we can help our patients establish networks and join SMA communities globally.
Within the UK there are several SMA charities all working towards improved standards of care (SoC), advice (e.g. on treatment access), guidance, networks and support for patients and families living with SMA.
We want to thank each of the wonderful teams, experts and communities, who working together have enabled a better insight into SMA. We will continue to strive for better care and treatment to help our wonderful SMA patients.
Please find the links to these UK charities websites below:
SMA UK’s website is full of useful information/advice/recent news and campaigns.
If you want to know more about the Drug Treatments available for adults and children in the UK living with SMA, see these handy pdfs below:
For anyone living in Wales, Scotland or Northern Ireland find out more information on the access agreements and treatments available near you.
SMA UK also have their own SMA UK YouTube channel with lots of informative videos and podcasts.
One of their most recent videos looks at an update on progress with SMA treatment programmes within the UK, featuring some of the leading experts in the UK.
This website made by SMA UK has lots of further material for children, teenagers and adults, with advice on:
- Health & Wellbeing
- Education/ School & Beyond
- Homes & Gardens
- Leisure Transport & Holidays
They have information sheets and upcoming events. You can even become a contributor yourself if you wish to share your experiences or tips.
You may already be a part of Treat SMA, who form an amazing community in the UK of people living with SMA, including parents/caregivers, together campaigning for individuals to have equal and improved access to treatments for everyone with SMA. Working together to be heard - improve social support, SoC, diagnostics and quality of life. Their website has lots of material about SMA, the treatments available, current campaigns they are involved with. It also offers a physio section, with videos from Marion - a physiotherapist - which can be accessed at any time.
MD UK is an organisation fighting muscle-wasting conditions, they have lots of information on symptoms, diagnosis and treatment of many types of muscular dystrophies, including SMA. Their website has a lot of information regarding support available, how to get involved e.g. fundraising events, and research such as current projects, clinical trials and funding for these.
Pathfinders Neuromuscular Alliance is a UK a user-led organisation, for teenagers and adults with neuromuscular conditions - focuses on promoting control, choices, quality of life and providing a voice for those with NMD. They have many online and offline social opportunities, including active peer support networks e.g. Facebook, forums.