Would YOU like to be involved in planning and commenting on HD research and literature?
We are looking for volunteers to help us learn more from the families we work with to join our HD VOICE group.
What is HD VOICE?
HD VOICE is made up of two groups of up to 6 people who have HD in the family. HD VOICE Research panel will enable people to be actively involved in research, not being the subject of research but assisting in areas such as the selection of research projects and working with researchers to plan research. HD VOICE Reader panel will be involved in reviewing new HDA information such as new fact sheets and website updates.
We believe that by having patient and public involvement in HD research and HDA literature, these will be more relevant to the needs and concerns of the people that matter most.
You can get involved if:
- You have experience of HD as a person with the HD gene, at risk, tested negative or are currently or have recently cared for someone with HD
- You are willing to attend training & meetings
- 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 HDA staff
- You are willing to dedicate time to written responses and where appropriate discuss information with a wider audience
- You are able to meet strict deadlines
What will be required of you if you get involved?
The time commitment required will vary as and when there are projects to do. We would envisage a minimum of 4 written responses a year and 1 face to face meeting a year.
If you are interested in getting involved please contact: Ruth Abuzaid (email@example.com). please note that places are limited.