HD Voice was established in 2017 with the aim of giving people with experience of Huntington’s Disease a voice in a variety of projects. We have around 30 members at present who have a range of experience with Huntington’s Disease (people with symptoms, people who are at-risk, are carers, or have had a negative test), all of these people volunteer their time to be part of the group.
There are two panels - the research panel, which will be available to researchers who are looking for a 'patient' voice when developing their research idea, or further along the line in the project e.g. designing patient leaflets.
The reader panel - which will mainly be involved in internal Huntington’s Disease Association work such as reviewing updates to the website and to fact/sheets guides to give a 'patient' view.
What is HD Voice?
HD Voice is a panel of volunteers who help the Huntington’s Disease Association learn about the needs of families living with Huntington’s. They work on different projects to help us make sure our information, literature and the research we’re involved in has the biggest impact for the people we work with.
HD Voice Research panel
Members of the research panel have a say by helping to select the types of research we get involved with. They also help scientists to plan and develop their research ideas.
HD Voice Reader panel
Members of the reader panel have a say by reviewing our information for people with Huntington’s disease, their families and carers. They help us to make sure the information is useful and relevant for people with the disease. This involves giving us feedback on things like our information guides, leaflets and our website.
We believe that by encouraging involvement from people with direct experience of Huntington’s, our information and the research we are involved in will be more relevant to the needs of the people who need it.
You can get involved if:
You have experience of Huntington’s as a person with the Huntington’s Disease gene, you’re at risk, you’ve tested negative or are currently or have recently cared for someone with Huntington’s.
You are willing to attend training and meetings (this is something we would expect people to do if able, it is not a requirement of the group).
You are able to listen to others and express your own views in a constructive way.
You have confidence in working with a mixed group of patients, carers, health professionals, researchers and Huntington’s Disease Association staff.
You are willing to dedicate time to written responses and, where appropriate, discuss information in a group.
You are able to meet deadlines
What will be required of you if you get involved?
We request around four written responses, there may also be the opportunity for direct discussions with researchers or to be part of focus groups. The time commitment required will vary depending on the project(s) you’ve chosen to take part in.
How to take part
If you are interested in getting involved please contact Ruth to request an application form:
By email to: Ruth.Abuzaid@hda.org.uk
Or by post to: Huntington’s Disease Association, Liverpool Science Park IC1, 131 Mount Pleasant, Liverpool, L3 5TF
If you would like to ask any questions about HD Voice please contact Ruth.Abuzaid@hda.org.uk 0151 331 5444