Address: Suite 24, IC1, Liverpool Science Park, 131 Mount Pleasant, Liverpool, L3 5TF
Telephone Number: 0151 331 5444
Registered Charity Number: 296453
Prevalence of HD in UK: 1.2:10,000
What is Huntington’s Disease?
Huntington’s Disease is a genetic and hereditary neuropsychiatric disease which manifests in adulthood mainly around the age of 30-50. There are some people who have late onset and others below the age of 20 which is the rarer juvenile form. People have a 50% chance of inheriting it from an affected parent. Symptoms include loss of mobility, speech, swallow, weight and psychiatric and cognitive disorder. Many people have severe involuntary movement of the limbs, trunk and face.
What support is available?
HDA is a national charity supporting individuals and families throughout England and Wales
We employ Specialist HD Advisers who provide advice, information and support to families affected by HD. They visit people at home, in care, in hospital and even in prison. They also deliver training and education to professionals. We employ a Specialist Youth Worker to support young people impacted by this disease.
Information provided by the Huntington’s Disease Association, 17th March 2017
Breaking Down Barriers Project Overview
HDA aim to “design a fact sheet and gene testing journey which pitches the right information about Huntington’s Disease to South Asian communities.” They will produce the following:
- A fact sheet – to explain the genetics of HD and provide contact details. This will be translated into different languages and available in audio format
- Gene Testing Journey – a document aimed at GP’s/Practice Managers and Genetics Departments
- Link – with HDA’s in Pakistan
- Develop their understanding – of the demographics of families affected by HD, specifically within the areas of West Yorkshire and West Midlands
Year 2 Project
The Breaking Down Barriers Advisory Group met in November 2017 to review the grant monitoring forms for year 1 projects and to consider the action plans submitted for year 2. Following successful completion of year 1, they were pleased to approve the plan submitted by Huntington’s Disease Association to carry out the following work:
- A continuation of their work from year 1
- Produce an animated video to describe what Huntington’s Disease is and the support available. The video will be aimed at South Asian communities and they will use visual illustrations and straight forward language. They will also cover sensitive topics such as end of life. The video will be used on the website and will help to inform families and raise awareness.