Latest News: Information
28 September 2016 / Posted in: Information
Steven, who has SMA Type 2 and is currently abroad as part of an Erasmus programme, has set up a petition as the DWP has told him that after 13 weeks abroad he will no longer be entitled to his motability vehicle.
27 September 2016 / Posted in: Information
Genetic Alliance UK’s ‘Hidden Costs’ report reveals that individuals and families affected by rare diseases face substantial financial and psychosocial costs as a result of poorly coordinated care in the UK.
23 September 2016 / Posted in: Information
SMA Support UK has received a commended certificate in the 2016 British Medical Association (BMA) Patient Information Awards for our leaflet Future Options in Pregnancy.
21 September 2016 / Posted in: Information
In this SMA Voices, Finlay's parents share their thoughts, feelings and experiences about their son who had SMA Type 1 and sadly died last year.
20 September 2016 / Posted in: Information
In our latest SMA Voices story, Esther Fox, artist, and Felicity Boardman, researcher, ask all of us to consider the wide ranging implications that pre-natal genetic screening would have if it were more widely available.
16 September 2016 / Posted in: Information, Treatments & Research
Principle Investigators in London and Newcastle have released this statement.
07 September 2016 / Posted in: Information
This is your opportunity to have a say on disabled people's rights under the United Nations Convention on the Rights of Persons with Disabilities.
25 August 2016 / Posted in: Information
Following discoveries made by Disability United's Editor, Fleur Perry, a petition has been launched to make sure that all disabled people can have the adaptations they need.
19 August 2016 / Posted in: Information
The Adult Onset SMA Route Map has been published! It has been written for individuals, families and professionals and it contains information on health, sources of support, and daily living topics.
16 August 2016 / Posted in: Information
This leaflet shares the experiences of families whose child with Spinal Muscular Atrophy has died. They talk about their personal experience of grief and how they cope with bereavement.