Huntington's Disease Association

HD Voice is an initiative by the Huntington’s Disease Association that gives families a voice in Huntington’s disease research and the internal work of the Huntington’s Disease Association.

What does it involve?

Research

Assisting the Huntington’s Disease Association with requests from researchers across a variety of tasks such as commenting on a proposed piece of research, attending a focus group or reviewing patient information sheets. Occasionally there are requests for volunteers to become longer-term ‘patient’ representatives on research projects. In general HD Voice is about supporting research and not being a participant in the research, however, we do also circulate relevant surveys etc, so members of HD Voice can respond as they see fit.

Internal work

Assisting the Huntington's Disease Association with internal work such as updates to web pages/literature and having a role in the planning and development of Huntington's Disease Association projects. We believe that HD Voice enables, research and resources to be more relevant to the needs and concerns of the people that matter most.

Who can join HD Voice?

Anyone from the Huntington's disease community who is willing to share their experiences within the group and will be confident working with a mix of patients, carers, health professionals, researchers and Huntington’s Disease Association staff.