Privacy Policy

Huntington’s Victoria (HV) is committed to protecting your privacy and complying with the Privacy Act 1988 and any privacy principles made under this act. 

This Privacy Policy (Policy) describes how we collect, hold, use and disclose your personal information and should be read together with our Terms of Use.

This Privacy Policy governs all personal information collected, used and disclosed by Huntington’s Victoria, including on the HV website (including any of the webpages located at and Huntington’s Community Connect (HCC).  

This Policy does not apply to any third-party websites (which are not owned or controlled by HV) that are linked to on any HV websites. HV does not make any guarantees regarding the privacy of these websites. 


What Type of Data do we collect? 

Huntington’s Victoria collects: 

  • Personal Information: Personal Information about you to enable us to provide certain services to you. The types of Personal Information that we may collect include but may not be limited to your name, address, telephone number, postcode, e-mail address, date of birth, bank/credit card details, gender, occupation, educational and work history and the internet protocol (IP) address of the computer you are using.
  • Sensitive Information: Occasionally, we also collect Personal Information that comprises limited Sensitive Information. This includes Personal Information about an individual’s racial origin, ethnic origin or sexual orientation. It also includes health information (i.e. information or an opinion about your health, wishes about health services or health services provided to them). 
  • Non-Personal Information: This information includes the search terms you have used across the Huntington’s Victoria Services, the pages you have visited, the features you have used, the actions you have taken and various log information including information about your browser such as the type and language, the date and time of your request, cookies to identify your browser and bug reports. Non-Personal Information is not capable of identifying the individual user. 


When do we Collect Personal Information? 

We collect Personal Information from you in a number of different ways including when you provide personal information to us over the phone, in person, by email, completing a form or through the use of Huntington’s Victoria’s services. You can browse through these Huntington’s Victoria Services and the HCC forum without telling us who you are or providing any Personal Information. With your consent however, in the following circumstances we will collect Personal Information from you: 

  • When you participate in or register for an event: You can register your interest in participating in an event. At this time, you would need to provide your name, age, gender and contact details. 
  • Registration to Huntington’s Community Connect: You can register to be a HCC Forum member through To do so, you will need to provide your email address age, gender, postcode, username and password. 
  • Applications for volunteer opportunities: You can apply through the HV Services to participate in HCC volunteer opportunities. To do so, you will need to provide your name, age, gender, contact details and any relevant experience you may have.

We may also collect Personal Information from you from time-to-time to update your existing information, and to acquire new supporters to support our ongoing cause.  


When do we collect Sensitive information? 

We only collect Sensitive Information in a very limited number of circumstances. You can browse through the Huntington’s Victoria Services and access most features of Huntington’s Victoria Services without disclosing Sensitive Information – the main exceptions to this are: 

  • registering for any education or extra webinars
  • taking part in our volunteer programs
  • you disclose a risk of harm to yourself or another person

With your consent, we will collect Sensitive Information about you in the following circumstances: 

(a) when you register to take part in any education or webinars that may be offered through the HCC or any Huntington’s Victoria service. We may ask you about disabilities, country of birth/language spoken at home, your wellbeing. (b) when you apply through the Huntington’s Victoria Services to be a Huntington’s Victoria volunteer or HCC peer leader. In applying for these positions, you may choose to answer questions about your relationship to Huntington’s Disease, age, lived experience (c) if you disclose a risk of harm to yourself or another person we may ask you for, and record information about, your safety, supports and access to help to fulfil any duty of care we may have to you. 

Other than this, we do not wish to be informed of Sensitive Information about you or others. If you choose to post Sensitive Information about yourself on the Huntington’s Victoria Services this becomes public information. We recommend that you exercise caution when disclosing Sensitive Information on the Huntington’s Victoria Services. 


When do we collect Non-Personal Information? 

As you navigate through the Huntington’s Victoria Services or conduct searches on the Huntington’s Victoria Services, non-Personal Information (including log information such as your page request, date and time of your request, bug reports and cookies that identify your browser) is collected without you actively providing it. This information allows us to understand how the Huntington’s Victoria Services are used and identify ways in which it can be improved. 



Cookies are pieces of information sent to your computer’s hard disk when you access information on that site. Each time you use your computer to access the same site, the information that was previously received is sent back to the site by your browser. Cookies do not identify individual users and do not allow us access to Personal Information (including Sensitive Information) about you. However, when you visit a Site operated by us, our servers may record non-Personal Information about your usage, the time and duration of your visit, the pages you visit and style settings. 

If you do not agree to the use of cookies, you can set the preference on your browser to remove all cookies and reject cookies in the future, but this may mean you do not have full access to the Huntington’s Victoria Services.  


How do we use the information we collect? 

(a) Personal Information: The Personal Information you provide us may be used for a number of purposes connected with services we offer and the purpose for which it was collected, including: 

  • processing donations;
  • fulfilling and processing your requests;
  • responding to your queries;
  • keeping you up to date with our latest news and special events;
  • updating Huntington’s Victoria supporters;
  • improving the quality of the Huntington’s Victoria Services and the services we provide;
  • enhancing the user experience through the use of analytics; and
  • purposes related to those described above which would reasonably be expected by you.

In addition, where you have consented, we may use your Personal Information to conduct marketing by way of mail, telephone, email and SMS. If you do not wish to receive any such information, you always have the right to opt-out of receiving this information and may contact us via our website, email or phone number.  

(b) Sensitive Information: Sensitive Information provided for our education service will be used to ensure your education session is tailored to your situation, so we can support you in the most effective way.  

If you provide Sensitive Information through surveys, feedback or through our volunteer service, information may be used to ensure we have content and services that reflect your experience with mental health, in internal research reports and/or in funding reports. Where possible however, we will de-identify this information. Sensitive information relating to risk of harm, health and safety is used only to fulfil any duty of care we may have to you. 

(c) Non-Personal Information: Non-Personal Information may be used and combined with Personal Information to provide better services to users of the Huntington’s Victoria Services, customise the Huntington’s Victoria Services based on your preferences, compile and analyse statistics, recruit new supporters and trends and otherwise administer and improve the Huntington’s Victoria Services for your use. 



Changes to this privacy policy 

We may from time to time change this Privacy Policy and will post updated versions of this Privacy Policy on the Huntington’s Victoria Services. Users of the Huntington’s Victoria Services or our services are advised that continued use of the Huntington’s Victoria Services or our services following any changes means you accept the changes, regardless of whether you have been given specific notice of the change. 


How to contact us 

For further information about our Privacy Policy, please contact us at: 

Huntington’s Victoria Australia (ABN 36 314 277 141) 

PO Box 2112,  

Hawthorn 3122 

Phone: (03) 9818 6333 

Email: [email protected]