Date commenced:      15 March 2023                                   Review date:   15 March 2025 

This policy explains how Dystonia Network of Australia Inc. (DNA) manages your personal information. DNA is an incorporated association in NSW, Australia and is registered with the Australian Charities and Not-for-profits Commission. DNA recognises the importance of protecting and respecting the privacy of personal information which is provided to us. For the purpose of this policy, DNA may be also be referred to as ‘we’, ‘us’ or ‘our’.

Why do we collect personal information?

DNA collects and stores the personal information of members to enable us to carry out our work supporting people with dystonia and raising awareness of dystonia. We are required under the Associations Incorporation Act 2009 (NSW) to maintain a register of our members.

What information do we collect?

DNA collects the following information when you join as a member of our organisaton:

  • Name
  • Address
  • Occupation
  • Email address
  • Signature

We also request credit card information when you join or donate to us, but we do not store this information.

DNA may also receive personal information that you provide to us via our online contact form, email and phone.

The DNA website has a member forum section where members may post dystonia related information and comment on other members’ posts. This forum is only accessible to members using their own username and password. We ask that you take care when posting your own personal information in the forum, and that you respect the privacy of other members who have shared information in the forum. This forum is moderated by the DNA committee and any inappropriate posts and comments will be removed.

The DNA website uses Google Analytics which tracks visits to our website and provides us with statistical information such as pages visited and time spent on pages. It does not provide us with your personal information. Our website also uses cookies which are small files containing data which store files on a user’s browser. You can set your browser to remove or block cookies from our website but it may impact on your use of our website and some of its functions.

What do we do with your information?

From time to time we email members to inform them of meetings, research, trials, news and events relating to dystonia and also renewal of memberships. When we send emails to our members we use ‘blind carbon copy’ so members’ individual email addresses are not visible to others. Should you attend (or offer an apology) at a meeting at which minutes are required to be taken (for example a general or special general meeting) your name will be recorded in the minutes. These minutes are distributed by email to all members. 

Security of your information

We take all reasonable steps to protect the information of our members which is stored on a password protected electronic database. Similarly, our email system is password protected and any information you provide to us by email, phone or our online contact form is only accessed by DNA committee members and only passed on if you give permission for it to be shared with a third party. Hardcopies of meeting minutes and other documents we are required to keep are stored in locked premises at DNA’s official address.

Our website uses a firewall and security scanner to identify and block malicious activity.

Opting Out or Changing your Personal Information

You can opt out of receiving emails from DNA or request that your details be changed or corrected at any time by emailing us at and requesting to be removed from our member email distribution list or to have your personal details updated.

Disclosing your personal information

DNA will not provide your personal information to third parties without your consent unless we are required by law or legal process to do so or there is a serious risk to life. We do not share your information with other individuals or organisations without your consent. We do not provide personal information to commercial organisations for marketing purposes. We may use personal information for publicity, for example in posts on our website, but only with your consent. 

What if there is a breach of privacy?

If we become aware of a breach of your personal information we will inform you as soon as possible. We will then take appropriate steps to prevent any further breaches.

Other websites

The DNA website contains links to many other websites. Please be aware that these websites may handle information about your visit to their site differently and may have their own privacy policies.

How to contact us

Should you have any concerns please contact us via our email