Shape our future - complete a survey
With your help four years ago, we produced a strategy on what the Huntington’s Disease Association should look like.
The strategy was inspired by our community, following consultation with the Huntington’s disease community. We are now planning the strategy that will run from 2028 – 2031.
What do you think? Are we doing the right things for our community?
Have your say
We're launching a new survey to find out what's working, what isn't, and what matters most to you. Your answers will shape our next strategy: the services we offer, our priorities and where we focus our energy and resources over the next three years.
When we asked you the same questions before our last strategy, you told us what mattered. We listened, and it shaped real decisions from how we deliver advice and emotional support to how we campaign for better care.
We want to hear from everyone affected by Huntington's disease. Whether you’ve used all, some or none of our services, your experience matters.
The survey covers:
- The services you have used
- The difference our work has made to you
- What we do well, and what we could do better
- What should be our priorities for the next three years
It takes about 15 minutes to complete. Every answer, whether a tick box or a few sentences, helps us build a clearer picture of how we can support you.
Why completing this survey matter?
The information you give us will help us decide our next steps, you can shape our future. The more responses we have, the more informed our work is.
Are you a professional working with people affected by Huntington's disease?
We want to hear from you too. If you're a GP, nurse, social worker, genetic counsellor, or any other professional supporting people and families affected by Huntington's disease, we've a separate survey just for you. It asks about your experience working alongside us, and what would help you support your patients or clients better.
The surveys will close 31 December 2026.
Thank you for helping us build a better life for everyone affected by Huntington's disease.
Inspired by our community.