Tel: 01789 267520

Latest News: Information & Support

Genetic Alliance UK launch the Hidden Costs Feasibility Study Report

27 September 2016 / Posted in: Information & Support

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.

Read full story

Leaflet Receives Commended Certificate

23 September 2016 / Posted in: Information & Support

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.

Read full story

New SMA Voices: Finlay

21 September 2016 / Posted in: Information & Support

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.

Read full story

The Implications Of Genetic Screening?

20 September 2016 / Posted in: Information & Support

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.

Read full story

ENDEAR clinical trial update

16 September 2016 / Posted in: Information & Support, Research

Principle Investigators in London and Newcastle have released this statement.

Read full story

Call For Evidence

07 September 2016 / Posted in: Information & Support

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.

Read full story

Disabled Facilities Grants Petition Launched

25 August 2016 / Posted in: Information & Support

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.

Read full story

Adult Onset SMA Route Map

19 August 2016 / Posted in: Information & Support

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.

Read full story

New Information Leaflet: 'Family Experiences of Bereavement'

16 August 2016 / Posted in: Information & Support

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.

Read full story

New SMA Voices: Mia

26 July 2016 / Posted in: Information & Support

Mia watched a video talk by Stella Young. It got her thinking and prompted the 14 year old to share her own thoughts and reflections with us.

Read full story