Logo of the Turner Syndrome Support Group NZ Incorporated

Turner Syndrome Support Group
NZ Incorporated

Providing support to people affected by Turner Syndrome and their families throughout New Zealand

Privacy Policy
(Turner Syndrome Support Group NZ Incorporated)

We respect your privacy and will never sell your information

Turner Syndrome Support Group NZ Incorporated (TSSG) has adopted this Privacy Policy to ensure that we handle personal information in accordance with the Privacy Act 1993.

Your privacy is important to us.  This privacy policy discloses what information we gather, why we collect is, how it is collected, how we use it, and how to correct or change it.  In this policy the terms “our” and “we” refer to TSSG and the terms “you” and “your” refer to TSSG members.


We gather various information about our current and potential customers including current and potential customers of our member clubs.  This information includes the following personal information;

  • Your name;
  • Your email, residential or business addresses;
  • Your Date of Birth and gender details;
  • Your telephone number;
  • Key interest areas.

Your personal information is provided to us in these ways;

  • By you to us for the purpose of enquiring about or receiving our products and services;
  • To us by you through any other method, or member’ website login and through your correspondence and discussions with us; and


We are committed to ensuring that your information is secure.  In order to prevent unauthorised access or disclosure we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect, including information collected online.

We ensure that third-party partners agree to use your personal information in a manner that protects its privacy and security and agree to destroy this information when it is no longer required for our purposes.

Use of your Information

We will never sell or rent your personal information to third-parties.  We may disclose your information to our trusted third-party partners so that we can provide better and more personalised services to you.  Our third-party partners include data analysis and data augmentation companies such as Google and Firebase, Companies that distribute our communication material on our behalf such as MailChimp and clubs which are members of our association.

We collect your personal information to help us advise you about our services and to provide and communicate with you about the services you receive from us.

We will use the information we collect from you for the purpose for which it is collected and for such other secondary purposes that are related to the primary purpose of collection.  We may also use your personal information as otherwise required by law.

Email, Newsletters and Other Notices

We may send emails throughout the enquiry process or related to the products and services you receive from us as well as other newsletter emails you elect to receive.  In addition, we may send out promotional material to you promoting products and services we think that may be relevant to you.  It is out policy to immediately remove any person from any mailing list upon the person’s request.

Website Information

When you use our website, we may collect information about how you interact with us including;

  • Your browser’s internet address;
  • Your IP address;
  • The date and time of your visit;
  • Your electronic device;
  • The pages you have visited on our website and on other sites immediately prior to or after you visit our website.

This information is used to:

  • Verify your identity when accessing our services;
  • Learn about your preferences in connection with the services we provide;
  • Maintain and update our membership records.

We may also provide this information to our partners for carrying out data analytics services for the purpose of providing insights to our business operations.  The information may be combined with other personal information we have collected from you or have received from a third-party partner.

About our Cookies

Cookies are small pieces of information that our website sends to your web browser and stores on your devices hard drive.

We use cookies and other tracking technologies to collect statistical information about our website and to help provide you with a tailored and personalised experience based on your preferences.  Our cookies collect data about your devices operating system and how you use our website.  You can elect to disable cookies in your internet browser or device settings however this may reduce the functionality of our website.  To ask your browser to block cookies simply search online for “cookies” and the name of your internet browser for step by step instructions.

Our website may also issue third-party cookies and tags which may collect similar information for our trusted third-part partners to use in the marketing and data analytics services we receive.


You consent to the collection and use of your personal information by TSSG in accordance with this privacy policy.  By using our website you consent to the storing and accessing of cookies on your device.

Access and Removal of Information

You have the right to seek access to the personal information held about you, to advise us of any inaccuracy and to have the information corrected and updated.  There are some exceptions to this right set out in the Privacy Act.  If you make an access request, we will ask you to verify your identify and specify what information you require.  We may charge a fee to cover the costs of meeting your request.  To access, correct or update personal information you have provided us please contact us.

We retain information we collect about you where we have legitimate reason to continue to do so.  However, we also have systems in place to destroy or anonymise your personal information in the event that we no longer require use of it for a lawful purpose.

Updates to our Information Practices

Changes to the Privacy Policy Issued July 2019. We may update this Privacy Policy from time to time.

We reserve the right to change this policy.  By continuing to liaise and engage with us in respect of any products and services supplied or provided by us, you agree to be bound by the amended policy.  You should check from time to time to see if the policy has changed.