Privacy Statement

Your privacy, confidence and feedback in using our site are very important to the Genetic, Undiagnosed and Rare Disease Collaborative staff, members and management. The collection of personal information we receive aims to be fair and not intrusive.

Any personal information you provide to us via our site will be held in the strictest confidence, and is collected only so that we might provide information and services to you, and or refer persons on to groups/organisations, so as services are better tailored to the needs of individuals and organisations.

Generally the personal information we collect from you depends on how you use our site. If you visit our site and read or download any information the Genetic, Undiagnosed and Rare Disease Collaborative will collect details of your server address, date and time of your visit to our site, and the pages you browsed or downloaded within our site. This information is aggregated, and used for statistical or web development purposes only.

If you are subscribing to our newsletter or asking us for information, it can be accessed in our ‘Contact Us’ section. We may need to collect personal contact details from you so that we can respond to your information request or query. This information may vary and depend upon the request; your preferred reply method and accessibility.

We will only record your email address if you send us a message, or if you are subscribing to our newsletter. Your email address will only be used for the purpose for which you provided it. We will not use your email address for any other purpose and will not disclose it to other parties, without your consent.

The information GUARD may need from you includes:

Your Name
Your Postal address
Your Phone and Fax numbers
Your E-mail address
Your Organisation or Company Name
Enquiry subject

We only collect information about you that we need to act on, this includes:

Application forms, membership, subscriptions
Details of a person’s genetic condition/enquiry for the purposes of referral or research
If appropriate, we may also use this personal information for purposes such as:
Information to service a specific need or accessibility to assist persons living with a disability

To participate in online surveys etc.
Where the information is authorised by law or necessary for a legal claim.
We will not collect or pass on any personal information from you that is discriminatory, make reference to racial or ethnic origin, reflect your religious or philosophical beliefs, contain details of health, disability or sexual preferences or activity. The only exceptions to this would include:

Where you give us expressed permission to do so, or
Where the information is authorised by law or necessary for a legal claim.
Contact details and services of: GUARD members, genetic services, community events, genetic support groups and other related organisations serving as a resource.
We will not sell, reveal, disclose, distribute, rent, license or pass your personal information to any third party other than those that are contracted to the Genetic, Undiagnosed and Rare Disease Collaborative. To keep the information confidential, all are bound by similar restrictions to those in our organisational privacy policy procedures regarding the handling of personal information.
From time to time we may collect the following types of information from our website for statistical purposes:

Date, number of Visits and the number of Page Views our site received;
Number of requested downloaded files by Valid Hits and by Bytes size;
The Geo Map Overlay is a graphical representation of the volume of visitors coming from locations around the world.
To collect this information we use “1st party” cookies to measure visitor activity – where they come from and how visitors use our site. This cookie identifier is a communication tag only.

Our website may decide to link to other websites which contain related information. A link to a site does not imply that the GUARD endorses that site, it is for reference purposes only.

GUARD may link to a site that collects information about the user and we cannot control the collection of this information. Users should contact these content providers directly if there are any questions about the use of information they collect. These sites and services may have their own privacy policies or no policy at all. We encourage users to review the privacy policies of any third party sites or services before providing them with personal information.

When linking to an external website, iinks should open as externally linked pages in a new browser window – the external site will not be framed within the GaRDN website.

GUARD encourages appropriate links to its website but reserves the right to refuse any such link or to terminate an existing link if the GUARD deems it to be inappropriate.

Except as set out in this ‘Privacy Statement’, we will not disclose your personal information unless you have previously informed us or have authorised us to do so, or if we must do so by law. If a court or government authority orders us to disclose any of your personal information, we will use our reasonable endeavours to notify you of this promptly, to give you an opportunity to exercise your legal rights unless order or law prohibits us from notifying you or when there is suspicion of fraud or criminal activity.

We will take all reasonable endeavours to ensure that any information collected, used or disclosed is accurate, up to date and stored in a secure environment. Unfortunately though, no data transmission is 100% safe over the Internet, so we cannot guarantee 100% security of any information you send or receive from us. It is recommended that you do not send sensitive or important information, such as credit card details through unsecured e-mail.

We will take reasonable steps to ensure that all information we collect, use or disclose is accurate, complete, up-to-date and stored in a secure environment that is accessible only by authorised personnel. All data collected by us is stored on a secure server located in Perth Western Australia.

To access information that is held about you please contact the Executive Director. If you wish to complain about a breach or potential breach of this privacy policy or the National Privacy Principles, you should direct your complaint to the Executive Director. We will try to resolve your complaint as soon as possible, but if you are unhappy with our response, you may contact the Office of the Privacy Commissioner who may assist you further.

Should you request it, we will provide you with access to any information we have collected from you through this website. We will also update your information if you let us know that it is inaccurate or non-current. You can contact us to access or discuss this information by sending an email

We will keep information for as long as it is necessary to service your membership/application or to continue to provide resources and services you have requested. We will retain information for a reasonable period if you cease to be a member or no longer require the services of GUARD, unless the law requires us to keep it for longer.

We do not knowingly solicit information from, market to children or young persons under the age of 18. However, the GUARD may provide resources or referrals for students requesting information for a school project or research.
Whilst we take all reasonable efforts to ensure the security and privacy of children and young persons, we cannot guarantee these won’t be compromised, and so request that all children under the age of 18 years have a parent or guardian to verify the information and or literature contents, it’s use of, or suitability.

Any changes that may occur to our ‘Privacy Statement’ will be placed on this web page

The ‘Online Privacy Statement’ link can be found at the bottom of our website. Our complete privacy policy contains this ‘Online Privacy Statement’ and the ‘GUARD Privacy Policy’ – our organisational procedures are available upon request, a hard copy may be posted or emailed to you.

Should you require further information from us about our policy, please send an email to: and specify your request or alternatively contact our office.