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Have your say in 2026

Huntington's Australia survey

Huntington’s Australia is committed to better understanding and meeting the diverse needs of people impacted by Huntington’s disease (HD).

Your feedback will help us improve the supports and services we offer. This survey should take around 10 minutes to complete.

If you have any questions or need assistance, please don’t hesitate to reach out. Thank you for taking the time to share your voice.
All responses are anonymous and will be kept strictly confidential.
1.What is your age group?
2.What is your gender?
3.What is your postcode?
4.Do you identify as Aboriginal or Torres Strait Islander?
5.What is your cultural background or ethnicity? (optional)
6.What is your connection to Huntington's disease?
7.What is your connection to Huntington's Australia
8.How did you first hear about Huntington's Australia?
9.How long have you been connected to Huntington's Australia?
10.Rate the importance of having the following services available to you or your family (1 - Not Important At All, 5 - Very Important)
Rate
Support Coordination
Social work and counselling services
Education and training
Carer or family support groups
Phone and email support
Outreach programs
Resources and information (e.g. factsheets)
Community events and awareness
11.How satisfied are you with the following services you've used? (1 - Not Satisfied, 5 - Very Satisfied or N/A if not used)
Rate
Support Coordination
Social work and counselling services
Education and training
Carer or family support groups
Phone and email support
Outreach programs
Resources and information (e.g. factsheets)
Community events and awareness
12.Have you accessed any of the following programs? (Tick all that apply)
13.How helpful have these programs been?
14.Overall, how satisfied are you with Huntington's Australia's services?
15.If Huntington's Australia didn't exist, how would this impact you or your family?
16.Which therapy services with HD experience are you struggling to find? (Tick all that apply)
17.I feel that healthcare providers understand Huntington’s disease.
18.I (or the person I care for) can access healthcare services that understand and support HD.
19.Healthcare providers (GP, specialists, hospital staff, etc.) work well together to manage my (or the person I care for) needs.
20.What does Huntington's Australia do well?
21.Where could we improve?
22.Are there any new services you’d like us to offer or gaps in support you think we should address?
23.How often would you like to hear from us?
24.What kind of information would you like to receive from us? (Tick all that apply)
25.Huntington’s Australia held its first National Conference in 2026. If you would be interested in attending this in future, what topics or types of content would you be most interested in?
Thank you for taking the time to help us improve our services and support at Huntington's Australia. We appreciate your support.