Turner Syndrome Association of New Zealand Incorporated (TSANZI) is committed to protect the privacy of our members and those connected with our association.

Purpose

The purpose of this privacy policy is to let our members along with the users of our website know when we collect personal information and what we may do with it. We don't use, share or disclose personal information collected or received through your membership or our website except as set out in this policy.

Scope

This privacy statement applies to personal information collected through all communications with TSANZI, the committee of the TSANZI and www.turnersyndrome.co.nz.

Collection, storage and use

You can use www.turnersyndrome.co.nz without disclosing any personal information.

Should you wish to be a member of TSANZI we will collect personal information from you, including information about your:

• name

• contact information

• location

• interactions with us

• billing or purchase information

• Medical Information related to Turner Syndrome

Voluntary disclosure of personal information

You may choose to voluntarily provide personal information through our website or to any of our volunteers. This information may be viewable by our committee, website administrators, and third-party contractors who may administrate or work on the website.

Electronic newsletters

When you subscribe to our membership, the details you provide may be stored in a secure third-party database. You will be asked to provide your name and email address so we can send you future electronic newsletters. When you request to unsubscribe to our alerts or newsletters or cancel your membership, your details will be deleted from the database.

Holding of information

When you provide personal information, unless otherwise indicated, it will be held by us. It may be stored or accessed on behalf of us by authorised third parties (such as third-party contractors) to the extent that is necessary, for example for them to administrate or work on the website. We will store and keep your personal information secure in accordance with the Privacy Act 2020 and any agents will be subject to our information security and privacy requirements.

Use of personal information

We will generally only use personal information provided to us through by your membership or our, for the purpose you provided it (eg, to administer, evaluate and improve the website, to improve our services, or to action or respond to the information provided, or for applying for grants or funding (no identifying details will be disclosed)). We may also use personal information provided to us through our website for other reasons permitted under the Privacy Act (eg, with your consent, for a directly related purpose, or where the law permits or requires it).

Disclosure of information

We will generally not share personal information that is provided or collected through our website or by our membership, unless it is necessary to do so for the purpose for which you gave us the information (eg, to make a grant application or sponsorship) or where you consent. We will not otherwise disclose personal information provided or collected through our website or through membership unless required or otherwise permitted by law.

Records and retention of personal information

We will only retain personal information as long as it is required for the purposes for which the information may lawfully be used.

Security

We may use information about your use of our website to prevent unauthorised access or attacks on these systems or to resolve such events. We may use this information even if you are not involved in such activity.

We may use services from one or more third party suppliers to monitor or maintain the cyber security of our systems and information. These third-party suppliers will have access to monitoring and logging information as well as information processed on our website and other IT systems.

Rights of access and correction

Your rights

You have the right to:

• find out from us whether we hold personal information about you

• access that information; and, if applicable

• request corrections of that information.

If we have a good reason for refusing a request for correction, you are entitled to request that a statement be attached to the information of the correction that was sought but not made.

If you want to check personal information that we hold, please write to:
Ben Everett, President, Turner Syndrome Association of New Zealand Incorporated, 351 Carlton Road, Te Awamutu 3800 info@turnersyndrome.co.nz

For more information on the privacy laws in New Zealand and contact details for the Office of the Privacy Commissioner, visit the Privacy Commissioner's website(external link).

Collecting statistical information using cookies via Google Analytics

We may use cookies to gather data about trends on our website usage using a tool called Google Analytics. This data will be viewable by website administrators and our executive committee. This information does not identify you personally.

Cookies

Browser or ‘web’ cookies are small text files that are sent by a website and stored on your computer's hard drive to collect information about how you browse the website.

Cookies are used to:

• measure how you use the website so it can be updated and improved based on your needs

• remember the notifications you’ve seen so that we don’t show them to you again

You can read Google’s privacy statement at the Google Safety Center (external link).

You can manually disable cookies at any time. Check your browser's 'Help' to find out how (disabling cookies will not affect your ability to use this website).

Data collected may include:

• your IP address

• the search terms you used on this site

• the pages you accessed on this site and the links you clicked on

• the date and time you visited this site

• the referring site (if any) from which you clicked to reach this site

• the device you used to access this site

• your operating system (eg, Windows 10, Mac OS X)

• the type of web browser you used to access this site (eg, Internet Explorer, Google Chrome)

• other things like your screen resolution, the release of your installed Flash version and the language setting of your browser.