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Legal Disclaimer and Privacy Policy

Medical or health information on this website is of an educational nature and provided by a non-medically qualified individual or organisation unless otherwise specified in the authorship link on individual pages. It should not be used as a substitute for professional medical advice.

We provide this information in good faith and without any warranty.

The website is funded solely by the Huntington’s NSW & ACT Inc. It does not accept paid advertising.

Copyright Information

We claim copyright in the content of this website, however you may download or copy content for private or non-commercial purposes. However we do request that you acknowledge the Huntington’s NSW & ACT Inc. website as the source if you reproduce content elsewhere.

Privacy Policy

Australian Privacy Principles

The Office of the Australian Information Commissioner (OAIC) has established Australian Privacy Principles guidelines (APPs) under the Privacy Act 1988. As an APP entity under the Act, Huntington’s NSW & ACT will comply with the APPs. The APPs are based on the Privacy Act 1988 and any updates and amendments to the Act, and are amended from time to time to reflect any changes in the Act. The OAIC’s summary of the APPs is in Appendix A.

We collect and store the names, contact details, donation and/or sales history for both donors to the Association and customers of the Huntington’s Disease Appeal, our telemarketing operation. We hold this information securely. It is used only to meet our business and legal obligations and to assist us with our fundraising. We may share this information with other organisations we have contracted to assist us with our fundraising, however they must comply with the same privacy laws as the Association.

Collecting and holding information

What types of information will we collect and hold?

Information about our members and clients

We will collect personal information directly from you that we need to perform the services we have agreed to provide to you. If you authorise us to do so we may also collect information, including sensitive information, from other sources.

Information we collect may include:

  • name and street address
  • email addresses and phone numbers
  • names of family members
  • your date of birth
  • health details you have provided us in the course of our supplying services or advice—either verbally, electronically or in writing
  • bank account details (if, as a member you elect to pay membership dues or make regular donations by giving us your bank account details).

Sensitive information

Because of the nature of the services we provide and the health issues integral to the Huntington’s community we will, at times, hold sensitive information about our clients’ health and that of their family members.

How we collect information?

We will collect personal information from members and clients in the following ways:

  • phone and face-to-face conversations
  • correspondence by email or by post
  • if you give us details when you complete online forms on our website
  • in the case of our clients we may receive information from providers of medical services if you have given your permission for the information to be shared with us, and from other third parties.

How we will we keep the information we collect secure?

Information we collect is stored on our password protected computer server housed at our premises at Chatham Road West Ryde. The premises are protected when unattended by a back-to-base security system. To prevent unauthorised access, use or disclosure of your personal information (including sensitive information), access is controlled and available only to authorised staff via security profiles set up to match their access authority.
Any information held on de-commissioned computers, mobile phones or other electronic devices we own will be cleared and the data destroyed as part of the decommissioning process, using secure hard drive and storage device destruction services.

Using the information we collect

How will we use the information we collect?

We will use your personal details and any sensitive information you give us, to help us provide you with services, advocate on your behalf, provide you and your family with information relevant to your needs and concerns, plan future services and to let you know about events and information that may be useful for you.

Will we pass the information to another party?

We will only pass information to a third party if you give us permission to do so. We will never pass your information to a third party to use for marketing purposes.

Accessing information

Who will have access to your information?

Only our staff with responsibility for providing services to you, advocating on your behalf, or meeting your current or future needs (as outlined in “Using the information we collect” above) will have access to your information.

Your right to access any information we hold about you

You have the right to request access to information we hold about you and to correct it if it is inaccurate, incomplete, misleading or not up to date. You have the right to authorise someone to do this on your behalf.


We do not collect personal information on this website and do not use cookies or other covert devices. Our website host collects some non-identifying technical information when the website is accessed, such as the type of browser and operating system used, search terms used, domain and referring host. This information cannot be associated with individuals, and is collected to enable us to provide a more useful website.

Further Information

Further information about the privacy laws can be obtained from:

Appendix A: Australian Privacy Principles Summary

This summary is provided by the Office of the Australian Information Commissioner.
APP 1 — Open and transparent management of personal information
Ensures that APP entities manage personal information in an open and transparent way. This includes having a clearly expressed and up to date APP privacy policy.
APP 2 — Anonymity and pseudonymity
Requires APP entities to give individuals the option of not identifying themselves, or of using a pseudonym. Limited exceptions apply.
APP 3 — Collection of solicited personal information
Outlines when an APP entity can collect personal information that is solicited. It applies higher standards to the collection of ‘sensitive’ information.
APP 4 — Dealing with unsolicited personal information
Outlines how APP entities must deal with unsolicited personal information.
APP 5 — Notification of the collection of personal information
Outlines when and in what circumstances an APP entity that collects personal information must notify an individual of certain matters.
APP 6 — Use or disclosure of personal information
Outlines the circumstances in which an APP entity may use or disclose personal information that it holds.
APP 7 — Direct marketing
An organisation may only use or disclose personal information for direct marketing purposes if certain conditions are met.
APP 8 — Cross-border disclosure of personal information
Outlines the steps an APP entity must take to protect personal information before it is disclosed overseas.
APP 9 — Adoption, use or disclosure of government related identifiers
Outlines the limited circumstances when an organisation may adopt a government related identifier of an individual as its own identifier, or use or disclose a government related identifier of an individual.
APP 10 — Quality of personal information
An APP entity must take reasonable steps to ensure the personal information it collects is accurate, up to date and complete. An entity must also take reasonable steps to ensure the personal information it uses or discloses is accurate, up to date, complete and relevant, having regard to the purpose of the use or disclosure.
APP 11 — Security of personal information
An APP entity must take reasonable steps to protect personal information it holds from misuse, interference and loss, and from unauthorised access, modification or disclosure. An entity has obligations to destroy or de-identify personal information in certain circumstances.
APP 12 — Access to personal information
Outlines an APP entity’s obligations when an individual requests to be given access to personal information held about them by the entity. This includes a requirement to provide access unless a specific exception applies.
APP 13 — Correction of personal information
Outlines an APP entity’s obligations in relation to correcting the personal information it holds about individuals.

06 April 2019