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Privacy Policy

Huntington's WA (Inc) ("we" or "us") recognises the importance of your privacy and the security of your personal information. We take steps to protect your personal information from misuse and use your information only in the ways described in this Privacy Policy.

We are committed to complying with the Australian Privacy Principles as set out in the Privacy Act 1988 (Cth).

1. Collection

Personal information

We will only collect personal information about you if it is necessary for one or more of our functions or activities.

We will collect personal information through direct communication with you or a person who is responsible for you, except in the following circumstances:

  • you are referred to us by another person or organisation, in which case that other person or organisation may communicate your name, contact details, and the reason for the referral; or
  • you make a donation to us through our telemarketing contractor, in which case our telemarketing contractor will send us your name and contact details so that we can issue you a tax invoice.

The kind of personal information we collect and hold will depend on the services we provide to you.

If you wish to be added to a mailing list or to be contacted by us for any reason, we may collect contact details including your name, phone number, fax number and e-mail address.

If you wish to make purchases from us or donations to us we may collect information necessary to process the transaction, which may include your credit card details, your billing address, and the delivery address for purchases.

If you wish to use our ImpactHD website, we may collect information necessary to create and administer your account, which may include your name and e-mail address, along with any other information you provide to us in connection with your use of the ImpactHD website (including health information, fitness levels and favorite social activities).

If you choose not to provide certain personal information we may not be able to provide you with the product or service you have requested.

Collection of anonymous information from our websites

When you visit our website, or "Website"), our server may attach a small data file called a "cookie" to your computer's memory. A cookie does not identify you personally but it does identify your computer.

You can set your browser to notify you when you receive a cookie and this will provide you with an opportunity to either accept or reject it in each instance.  If you reject a cookie, some of the parts or features of our Website may not function properly.

We utilise session cookies to keep track of time spent in our online shop and the online donations pages of our Website. This helps protect your information from unauthorised access by terminating sessions that remain inactive for a certain period.

We use Google Analytics to help monitor the traffic patterns of our Website and to analyse how visitors use the Website. This analytical tool uses persistent cookies to collect standard internet log information and visitor behaviour information in an anonymous form. The information generated by the cookie about your use of the Website (including your IP address) is transmitted to Google. This information is used to evaluate visitors' use of the Website and to compile statistical reports on our Website activity.

2. Use and Disclosure

At the time we collect personal information from you, we will inform you of the way the information is to be used. We will not use or disclose the information for any other unrelated purpose without your consent, except in the following circumstances:

  • your contact information may be used to send news, information about our activities and general promotional material which we believe may be of interest to you. Whenever we contact you, we will always give you an opportunity to opt out of receiving such communications;
  • we also may use your contact details to share information about events and services of other organisations we believe may be of interest to you but we will never disclose your personal information to any other organisation;
  • your health information may be de-identified and used or disclosed for the purposes of research, or the compilation of statistics, relevant to public health;
  • your personal information may be used or disclosed in the case of an emergency;
  • your personal information may be used or disclosed where unlawful activity is suspected, or information must be disclosed to a law enforcement body; and
  • we may disclose your personal information to the extent required by law.

We may use contractors to provide us with information technology support, which may involve access to databases containing your personal information. We take reasonable steps to ensure our contractors keep your personal information confidential and comply with this Privacy Policy.

All the information that we collect is kept confidential to the best of our ability.  

If you request us not to use personal information in a particular manner or at all, we will adopt all reasonable measures to observe your request but we may still use or disclose that information if:

  • we subsequently notify you of the intended use or disclosure and you do not object to that use or disclosure;
  • we believe that the use or disclosure is reasonably necessary to assist a law enforcement agency or an agency responsible for government or public security in the performance of their functions; or
  • we are required by law to disclose the information.


3. Information Quality

We keep your personal information as accurate, complete and up-to-date as possible. We make an effort to ensure this information is of high quality, but this relies on the accuracy and frequency of information provided by you and other third parties.

4. Information Security

We take reasonable steps to protect your personal information from misuse and loss from unauthorised access, modification or disclosure.

Physical material

Hardcopy documents are stored securely on our premises, accessible only by authorised staff and volunteers, using a secure document management system.

Electronic information

Information that is stored electronically is subject to computer and network security. Our databases and network may only be accessed by authorised users using log-in processes. Our access to e-mail and internet is protected by a firewall.

We do not control, and do not accept responsibility for, the privacy practices or contents of any linked website. Please check the privacy policies of linked websites before disclosing any information.

Destruction of personal information

We take reasonable steps to destroy or permanently de-identify personal information which is no longer needed for the purposes described in this Privacy Policy. We generally do this within 365 days.

Upon written request, we will take reasonable steps to destroy all personal information that we have collected from you.

5. Openness

We make our Privacy Policy available on our Internet website and can also provide a hard copy version upon request.

If you would like more information about our privacy practices, you can write to us at:

Huntington's WA
The Niche
11 Aberdare Road
Nedlands WA 6005

Alternatively, please call 08 6457 7599 or e-mail

6. Access and Correction

You have the right of access to personal information we hold about you. If you wish to obtain access to this information, please contact us using the details provided above.

If such a request is made, we will review our records to determine what personal information we hold relating to you and respond to your request as soon as possible, but in any event, within 21 days. We endeavour to ensure the person seeking access is indeed the person the information is about and, in this regard, we may request that identification is provided before the personal information is released.

Once we have notified you of the nature of the personal information relating to you which we hold, we will organise a time for you to view that information. However, in accordance with the Privacy Act, we may withhold some of the personal information which we hold where we consider that:

  • in the case of personal information, providing access would pose a serious and imminent threat to the life or health of any individual;
  • providing access would have an unreasonable impact upon the privacy of other individuals;
  • the request for access is frivolous or vexatious;
  • the information relates to existing or anticipated legal proceedings between us and you, and the information would not be accessible by the process of discovery in those proceedings;
  • providing access would reveal our intentions in relation to negotiations with you in such a way as to prejudice those negotiations;
  • providing access would be unlawful or the denying of access is required or authorised by or under law;
  • providing access would be likely to prejudice an investigation of possible unlawful activity;
  • providing access would be likely to prejudice the administration of the law and justice; or
  • an enforcement body performing a lawful security function has asked us not to provide access to the information on the basis that providing access would be likely to cause damage to the security of Australia.

We do not levy a charge in respect of the making of a request for access to personal information.  However, we may charge you for the reasonable costs incurred by us in providing you with access to the personal information held.

If your personal information changes, or in the event that you no longer wish to receive information from us, then please contact us on the details provided above.

7. Identifiers

We will not use Government identity numbers, such as tax-file or medicare numbers, to identify you.

8. Anonymity

We will provide you with the option of not identifying yourself when interacting with us, as long as it is lawful and practical to do so.

However, there are a number of transactions that cannot be completed, and services that cannot be provided, if requested personal information is not made available to us.

9. Transborder Data Flows

It is possible that  we will receive research requests from outside of Australia to access your personal information. When such a request is received, and unless you have been advised and approved of the transfer, your data will be de-identified. Countries that are most likely to request data include New Zealand, United States, Canada and the United Kingdom.

10. Sensitive Information

We may ask you for health information to provide services to you.

This may include information concerning whether you are at risk or have been diagnosed with Huntington's disease, and information relating to your symptoms, health needs and fitness levels.

We will not collect health information about you without your consent, unless:

  • we are required by law to collect the information;
  • you are incapable of giving or communicating consent in the case of a medical emergency;
  • we need to collect health information to provide you with a health service, and have complied with relevant laws or professional codes of conduct;
  • we must collect the information to commence or defend a legal action; or
  • we collect health information for research, statistical, management or funding purposes, in a way that complies with applicable laws, professional codes of conduct or guidelines approved by the Privacy Commissioner.
  • We will not use or disclose your health information without your consent except:
    • in the case an emergency;
    • where we are required by law to disclose the health information;
    • for the purposes of research, or the compilation of statistics, relevant to public health; or
    • to a person who is responsible for you if you are unable to give or communicate consent.


11. Policy may be Amended

We may, without notice, amend or modify our Privacy Policy by posting an amended Privacy Policy on our website.

Any changes will not apply retrospectively. Accordingly, if at any point we decide to use your personal information in a manner different from that stated when it was collected, we will notify you and you will have a choice as to whether we may use this information in the different manner.

12. Complaints

If you have any questions or concerns about this Privacy Policy or how your personal information is handled by us, you may contact us.  Our contact details are set out above.

We will aim to respond to your request or complaint promptly.  We take all complaints seriously and are committed to a quick and fair resolution.

You may also make a complaint to the Office of the Australian Information Commissioner (phone 1300 363 992).  Their websites also contain further information about making complaints relating to privacy.