We work with a team of dedicated researchers who work to improve understanding, care and support for people affected by Huntington’s disease.
Huntington's disease doesn’t just affect people physically. It can have a significant impact on emotional wellbeing, relationships, and family dynamics. Our research helps develop more effective, tailored, and compassionate support - Paige, trainee Clinical Psychologist
At the University of Leicester, researchers are exploring the emotional, social, and psychological impacts of Huntington's disease. But they couldn’t do this work alone. It relies on the voices, experiences, and support of the Huntington's disease community.
We spoke to some of the students and researchers to hear how the community has shaped their work and why this research matters so much.
Why is this research important?
Huntington's disease is often thought of as a physical condition, but its impact goes much deeper. It can affect mental health, relationships, family life, and how people feel about themselves. By exploring these psychological and emotional experiences, researchers can help shape better, more compassionate support for people living with the condition and their loved ones. Suzanne, part of the University of Leicester research team, explains:
We know that many people affected by Huntington's disease experience challenges with their mental health. The more we can understand those psychological impacts the better chance we have of making sure the right support is available to the people who need it.
The power of community involvement
The Huntington's disease community is at the heart of this work. From helping shape research questions to sharing personal experiences, your input ensures research reflects real-life challenges and priorities. Tierney, a Clinical Psychologist, shared how much this has meant for her project:
Exploring people’s psychological and emotional experiences is so important. The support from the community, through groups like HD Voice, helped us shape the study and make sure we were asking the right questions.
Hear from the researchers themselves
Watch the short videos and meet the team from the University of Leicester and hear why your involvement is so vital.
How to get involved
There are lots of ways you can help shape research. You can share your experiences through interviews or focus groups, take part in studies, or help shape future research through the Huntington's Disease Association’s HD Voice. Sarah, part of the Leicester Psychology Research Group, says:
We are so grateful for the voices, reflections, and input from the community. Your experiences help keep our work focused on the things that matter most, not just what researchers think is important.
Thank you to every researcher and every member of the community who has shared their story, taken part in studies, or helped shape research. Your voices are at the heart of making it possible.