Latest News: Information
Mental Health Awareness Week 2019
14 May 2019 / Posted in: Information, Support
This week is Mental Health Awareness Week. Read Rare Disease UK's report from 2018 about mental health and the impact of living with a rare disease, and find out more about how we may be able to help with emotional support.
Education Secretary Seeking Views On Funding For Children With Special Needs
03 May 2019 / Posted in: Information, Support
Damian Hinds is at a conference of the National Association of Head Teachers today where he is expected to make an announcement calling for a fresh look at educational funding for children with special needs in England.
DCP - Survey about the impact of caring for a disabled child
10 April 2019 / Posted in: Information, Support
Disabled Children's Partnership are looking to hear from those with parental responsibility for disabled children and young people (from birth to the age of 25) to complete their survey about the impact that caring for their child has had on them and their families. Closes 28th April.
Information and Support over Easter
10 April 2019 / Posted in: Information, Support
We are sorry we are unable to stay open for phone or email enquiries over the Easter bank holiday. Find out where you can find information about SMA and support during this time.
The EnAble Fund for Elected Office
04 April 2019 / Posted in: Information, Support
This fund is intended to cover the additional financial costs associated with a disability, that would otherwise prevent someone from seeking elected office.
Survey: Accessing Cervical Screening (Smear Test) with a Physical Disability
04 April 2019 / Posted in: Information, Support
Disability Rights UK and Jo's Cervical Cancer Trust are running this survey to find out about experiences in accessing cervical screening (smear test), as well as what provisions are available to enable accessing screening.
Neuro Numbers: The Neurological Alliance Report
14 March 2019 / Posted in: Information, Support
This new report highlights data including that more than one in six people in England are living with one or more neurological conditions, including SMA. It's being used to call for greater prioritisation of neurology by the health and care system.
Study to Explore the Quality of Care Received by Children and Young People on Long-Term Ventilation
11 March 2019 / Posted in: Information, Support
This study is currently being conducted by NCEPOD about the quality of care received by those aged 0-24 years on long-term ventilation (including non-invasive). They are looking to hear from both patients and parent carers for their views.
Neurological Alliance Patient Experience Survey
11 March 2019 / Posted in: Information, Support
The Neurological Alliance is running this survey to find out about the care and treatment for neurological conditions (this includes SMA). The purpose is to provide information which can help them monitor and improve the future quality of health services and social care for people with neurological conditions.
MDUK's Benefits and Grants Survey
31 January 2019 / Posted in: Information, Support
Muscular Dystrophy UK's ‘Focus on Disability Benefits’ campaign aims to ensure that people with neuromuscular conditions can access fair and informed assessments for support that meets their needs. This survey is about your experience of the application process for any benefits you receive.