Latest News: Information & Support
26 June 2017 / Posted in: Information & Support
Rare Disease UK will be coordinating a new project that aims to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition.
23 June 2017 / Posted in: Information & Support
The Disabled Children’s Partnership are launching the 'Secret Life of Us' campaign on 28th June, joining forces to fight for better health and social care for disabled children, young people and their families in England.
08 June 2017 / Posted in: Information & Support
Contact a Family launched their Universal Credit #KnowYourClaim campaign on 10th May. This was to make sure people know about Universal Credit and how it might affect families.
07 June 2017 / Posted in: Information & Support
They want to hear from people living with a disability on their experience of using the services that they regulate; hospitals, GP surgeries, care homes, care at home services, for example.
09 May 2017 / Posted in: Information & Support
Explaining SMA and why it happens is quite difficult. This book is aimed at children aged 8 and over but it can also be read to a younger child, be used in schools or when explaining SMA to friends.
04 May 2017 / Posted in: Information & Support
This year, Together for Short Lives will be turning up the volume on children’s palliative care to raise awareness. Find out how you can get involved.
03 May 2017 / Posted in: Information & Support
Lidia, Maddison's mum, shares their family's thoughts and experiences in this SMA Voices piece about Maddison who was diagnosed with SMARD at 9 months and is now 8 years old.
27 April 2017 / Posted in: Information & Support
Calling all individuals, families and professionals. Please tell us what you think about current services and give your thoughts on our future direction in our survey. Closing date for responses is 5pm on Friday 26th May 2017.
12 April 2017 / Posted in: Information & Support
Ross Lannon is 23 years old and has Spinal Muscular Atrophy Type 2. He has written an SMA Voices for our website that describes his recent trip to the Calvert Trust in Exmoor with a group of friends.
28 March 2017 / Posted in: Information & Support
This resource gives a summary of support services and resources available in the UK for families. It is based on the issues, concerns and personal experience of parents with contributions from health and social care professionals.