HD Voice is a new group, started earlier in this year with the aim of giving people with personal experience of HD a voice in a variety of projects. We have around 20 members at present who have a range of experience with HD (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 HDA work such as reviewing updates to the website and to fact/sheets guides to give a 'patient' view.
HD Voice is a group of volunteers who help the HDA 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.
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.
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:
We envisage a minimum of four written responses a year and one face to face meeting a year. The time commitment required will vary depending on the project you’re asked to take part in.
If you are interested in getting involved you will need to complete an application form.
Please contact Ruth Abuzaid, Deputy Head of Advisory Service, by email: firstname.lastname@example.org or phone: 0208 446 9879.