Last Updated: 04 September 2023

PLEASE READ THIS PRIVACY POLICY CAREFULLY BEFORE USING THIS WEBSITE/APPLICATION.

1. INFORMATION ABOUT US:

1.1 TOURETTE SYNDROME ASSOCIATION OF AUSTRALIA INC, is a registered charity in Australia, with ABN number 76104434459 and having its registered office at McNevin Dixon Building, Prince of Wales Hospital Avoca Street, Randwick, NSW, 2035, Australia (the “TSAA”).

1.2 TSAA is committed to protecting and respecting your privacy when you use our website at www.tourette.org.au (the “Site”) and/or any applications made available by TSAA (together with the Site the “Online Tools”).

2. SCOPE OF PRIVACY POLICY

2.1 This privacy policy (the “Privacy Policy”) applies to:

2.1.1 any users of the Online Tools;

2.1.2 any users of TSAA’s services; and

2.1.3 anyone who contacts or otherwise submits information to TSAA via the Online Tools.

3. PRIVACY POLICY

3.1 This Privacy Policy sets out the basis upon which TSAA will process any Personal Information that TSAA collects from you, or that you provide to TSAA.

3.2 Please read this Privacy Policy carefully to understand TSAA’s views and practices regarding your Personal Information and how TSAA will treat it.

3.3 By accessing and using the Online Tools and/or providing us with Personal Information, you acknowledge and agree that you:

3.3.1 understand and unconditionally accept and agree to this Privacy Policy; and

3.3.2 consent to TSAA processing / using your Personal Information in the manner set out in this Privacy Policy.

3.4 If you do not accept and agree to this Privacy Policy, please do not provide your Personal Information to TSAA and do not interact with or use the Online Tools.

3.5 TSAA recommends that you print a copy of this Privacy Policy for future reference.

4. OUR PROMISE

4.1 We promise:

4.1.1 to keep your Personal Information safe and private;

4.1.2 unless otherwise agreed with you, not to sell your Personal Information; and

4.1.3 to give you ways to manage and review your choices regarding Personal Information usage restrictions at any time.

5. PERSONAL INFORMATION WE COLLECT

5.1 TSAA may collect your Personal Information from you, including:

5.1.1 your full name;

5.1.2 your address;

5.1.3 your email address;

5.1.4 your land phone number and/or mobile phone number;

5.1.5 birthdates of children (if under the age of 18);

5.1.6 your ethnic background;

5.1.7 the primary language spoken at your home;

5.1.8 whether you have Tourette Syndrome (or are awaiting a diagnosis);

5.1.9 whether you have tic-disorder (or are awaiting a diagnosis);

5.1.10 medical information applicable to attending our camps, such as anaphylaxis, food or other allergies/intolerances/restrictions/preferences;

5.1.11 your emergency contact details;

5.1.12 your Internet Protocol address;

5.1.13 your credit card details;

5.1.14 your Working With Children Check ID number (if you are a volunteer);

5.1.15 your Working With Children Check ID expiration date (if you are a volunteer); and

5.1.16 any other information we may request from you from time to time.

6. WHERE WE COLLECT PERSONAL INFORMATION FROM

6.1 TSAA may collect Personal Information when:

You give us data, including

6.1.1 when you talk to us on the phone;]

6.1.2 when you send us emails or letters;]

6.1.3 when you take part in our competitions or promotions;]

6.1.4 when you create or update your account with TSAA;]

6.1.5 when we conduct background checks;]

6.1.6 when you access third party products and services through the Online Tools;

6.1.7 when you contact TSAA, for example to provide feedback or to request for assistance;

6.1.8 when you complete surveys sent to you by TSAA or on its behalf;

6.1.9 when you enable features that require TSAA’s access to your address book or calendar;

6.1.10 when you provide TSAA with payment information;

6.1.11 when you provide TSAA with access to your public profiles (i.e. Facebook);

6.1.12 when you enable features or utilise services requesting location data;

You use Our services / Online Tools, including

6.1.13 your precise or approximate location information is determined through data such as GPS, IP address, Wifi and any other location-based technology we may use;

6.1.14 information about transactions made via use of the Online Tools;

6.1.15 information about how you interact with our services and third party products and services is determined through our Online Tools, including your expressed preferences and chosen settings chosen;

We receive data from other sources, including:

6.1.16 campsite operators (for people that attend TSAA camps);

6.1.17 payment service providers;

6.1.18 financial service providers;

6.1.19 insurance providers;

6.1.20 advertising networks;

6.1.21 analytics providers;

6.1.22 search information providers;

6.1.23 other users of our services and/or third party products and services provided through the Online Tools; and/or

6.1.24 other third parties.

7. COOKIES

7.1 Our Site uses cookies to distinguish you from other users. This helps us to provide you with a good experience when you browse, and also allows us to improve, the Online Tools.

7.2 A cookie is information that is transferred to your computer's hard drive - a small file of letters and numbers that we store on your browser or the hard drive of your computer, if you agree.

7.3 We use the following cookies:

7.3.1 Strictly necessary cookies – these are required for the operation of the Online Tools (including cookies that enable you to log into secure areas).

7.3.2 Analytical / performance cookies - these allow us to recognise and count the number of visitors to and to see how visitors move around the Online Tools when they are using it.

7.3.3 Functionality cookies - these are used to recognise you when you return to the Online Tools and enables us to personalise our content for you and greet you by name etc.

7.3.4 Targeting cookies - these cookies record your visit to the Online Tools, the pages you have visited and the links you have followed.

7.4 You may block any or all of these cookies by activating the setting on your browser that allows you to refuse the setting of all or some cookies.

7.5 Please note that if you use your browser settings to block all cookies (including essential cookies) you may not be able to access all or parts of our Site.

8. YOUR PROTECTIONS UNDER THE LAW

8.1 As well as under this Privacy Policy, the privacy of your Personal Information is protected by law in relevant jurisdictions. This Clause 8 explains generally how that works.

8.2 TSSA complies at all times with all applicable data protection and privacy legislation.

8.3 Additionally, the EU General Data Protection Regulation (“GDPR”) specifies that a data controller is only allowed to use your Personal Information if it has a proper reason to do so. This includes sharing it outside of the data controller’s organisation.

8.4 Whilst we may operate outside of the European Union, we have chosen to generally align with the standards of the GDPR.

9. HOW WE USE DATA / INFORMATION

9.1 TSAA may use information held about you in the following ways:

9.1.1 to carry out TSAA’s obligations and to provide you with the information and/or services that you request from TSAA;

9.1.2 to provide you, or permit selected third parties to provide you with information about services TSAA offers or feels may interest you;

9.1.3 to maintain registers and records of our members as required by law;

9.1.4 to notify you about changes to TSAA’s services;

9.1.5 to ensure that content from the Online Tools is presented in the most effective manner for you and for your device;

9.1.6 to administer the Online Tools and for internal operations, including troubleshooting, data analysis, testing, research, statistical and survey purposes;

9.1.7 to allow you to participate in interactive features of the Online Tools, when you choose to do so;

9.1.8 as part of TSAA’s efforts to maintain the safety, security and integrity of TSAA’s Online Tools and services;

9.1.9 to deliver relevant advertising to you and measure or understand the effectiveness of the same;

9.1.10 to provide appropriate assistance to you when you contact TSAA’s customer support;

9.1.11 for testing, research, analysis and support initiative development;

9.1.12 to comply with our legal and regulatory obligations;

9.1.13 to provide to TSAA’s auditors;

9.1.14 to verify information you have provided to us for our “Know Your Client” purposes;

9.1.15 to provide selected third parties with such information to facilitate them in performing their obligations and/or services, as the case may be;

9.1.16 where we have a Legitimate Interest; and

9.1.17 to investigate or address claims or disputes relating to your use of TSAA’s services and/or the Online Tools in accordance with Applicable Law.

9.2 If you have any questions or want more details about how we use your Personal Information, you can ask us via email at: complaints@tourette.org.au

10. LEGITIMATE INTEREST

10.1 In relation to Clause 9, our reasons for which we may use your Personal Information include where:

10.1.1 we have your consent;

10.1.2 we are fulfilling a contract with you;

10.1.3 we are under a legal duty to do so (eg KYC); and/or

10.1.4 we have a Legitimate Interest to do so.

10.2 For the purposes of this Privacy Policy, “Legitimate Interest” means where we believe that processing your Personal Information is necessary for:

10.2.1 keeping our records up to date;

10.2.2 working out which of our support services and products may interest you and telling you about them;

10.2.3 developing support services and products, and what we charge for them;

10.2.4 defining types of customers for new products or services;

10.2.5 seeking your consent when we need it to contact you;

10.2.6 efficiently fulfilling our legal and/or contractual duties;

10.2.7 to protect the rights, property or safety of any of TSAA’s members, volunteer, employees or customers; and/or

10.2.8 complying with Applicable Law and rules and guidance from regulators.

11. DISCLOSURE OF YOUR DATA / INFORMATION

11.1 TSAA may share / disclose your information with selected third parties and in certain circumstances, including:

11.1.1 people who TSAA works with, including affiliates, volunteers employees, suppliers and sub-contractors (such as camp organisers) to deliver your services and for the performance of any contract TSAA enters into with you;

11.1.2 to the campsites operators (in the event that you elect to attend a TSAA camp);

11.1.3 to video conferencing operators such as Zoom and Wild Apricot (in the event that you elect to attend an online TSAA meeting);

11.1.4 advertisers and advertising networks that require the data to select and serve relevant adverts to you and others;

11.1.5 analytics and search engine providers that assist TSAA in the improvement and optimisation of the Online Tools;

11.1.6 where TSAA sells or buys any business or assets, in which case we may disclose your information to the prospective seller or buyer of such business or assets;

11.1.7 where TSAA is under a duty to disclose or share your information in order to comply with Applicable Law, or any legal or regulatory obligation or order;

11.1.8 in order to enforce or apply any of TSAA’s contractual terms and conditions; and

11.1.9 to protect the rights, property or safety of any of TSAA’s members, volunteer, employees or customers.

12. WHERE WE STORE YOUR PERSONAL DATA / INFORMATION

12.1 The information that we collect from you may be transferred to, and stored at, a destination outside of the Territory.

12.2 Your information may be processed by people outside of the Territory who work for TSAA or for one of our suppliers or selected third parties, pursuant to data processing agreements entered into with us, that are compliant with this Privacy Policy.

12.3 Such people may be engaged in, among other things:

12.3.1 the provision of services;

12.3.2 the processing of your payment details; and/or

12.3.3 the provision of support services.

12.4 By submitting your information, you agree to the information transfer, storage or processing referred to in this Privacy Policy.

12.5 Unfortunately, the transmission of information via the internet is not completely secure and any transmission of data / information is at your own risk.

12.6 TSAA will use reasonable efforts to ensure that your information is treated securely and in accordance with this Privacy Policy.

12.7 Notwithstanding Clause 13.5, TSAA cannot guarantee the security of your information transmitted to the Online Tools.

12.8 Where you have a password which enables you to access certain parts of the Online Tools, you are responsible for keeping that password confidential and you agree not to disclose it to anyone.

13. HOW LONG WE KEEP YOUR PERSONAL INFORMATION

13.1 We will keep your Personal Information for as long as you maintain an account with TSAA or such other period as may be required by Applicable Law.

13.2 After you terminate your account with TSAA, we may keep your Personal Information for up to 5 years for one of these reasons:

13.2.1 to respond to any questions or complaints;

13.2.2 to show that we treated you fairly;

13.2.3 to maintain records according to rules that apply to us.

13.3 We may keep your Personal Information for longer than 5 years if we cannot delete it for legal, regulatory, or technical reasons. We may also keep it for research or statistical purposes. If we do, we will make sure your privacy is protected and only use it for those purposes.

14. IF YOU CHOOSE NOT TO GIVE US PERSONAL INFORMATION

14.1 We may need to collect Personal Information as required by Applicable Law, or to enter into or fulfil a contract we have with you.

14.2 If you choose not to give us this Personal Information, it may:

14.2.1 delay or prevent us from fulfilling a contract we have with you;

14.2.2 delay or prevent us from doing what we must do by Applicable Law;

14.2.3 mean that we cannot run your accounts and/or policies; and/or

14.2.4 mean that we decide to cancel any account you have with us.

14.3 We sometimes ask for information that is useful, but not required by Applicable Law or a contract. We will make this clear when we ask for it. You do not have to give us these extra details and it won't affect the products or services you have with us.

15. HOW TO GET A COPY OF YOUR PERSONAL INFORMATION

15.1 You can obtain a copy of your Personal Information that we hold by writing to us at complaints@tourette.org.au

16. HOW TO CORRECT YOUR PERSONAL INFORMATION

16.1 You have the right to question any Personal Information that we have about you, which you think is wrong or incomplete. Please contact us at complaints@tourette.org.au if you want to do this.

16.2 Where you submit a request pursuant to Clause 16.1, we will take reasonable steps to check the accuracy of your Personal Information and make any necessary corrections.

17. REQUESTING THAT WE CEASE USING YOUR PERSONAL INFORMATION

17.1 You have the right to object to our use of your Personal Information, or to ask us to delete, remove or stop using your Personal Information.

17.2 We want you to tell us if you think that we should not be using your Personal Information. But please note there may be legal or other official reasons why we need to still retain and/or use your Personal Information and that we reserve our rights as per Clause 14.

17.3 We may sometimes be able to restrict the use of your Personal Information. This means that the Personal Information would only be used for certain things, such as legal claims or to exercise legal rights.

17.4 Where Clause 18.3 applies, we would not use or share your Personal Information in other ways while it is restricted.

17.5 You can ask that we restrict the use of your Personal Information if:

17.5.1 it is not accurate;

17.5.2 it has been used unlawfully but you do not want us to delete it;

17.5.3 it is not relevant anymore, but you want us to keep it for use in legal claims; or

17.5.4 you have already asked us to stop using your Personal Information but you are waiting for us to tell you if we are allowed to keep on using it.

17.6 TSAA will usually inform you (before collecting your information) where it intends to:

17.6.1 use your data for marketing purposes; or

17.6.2 disclose your information to others for marketing purposes.

17.7 If you want to object to how we use your Personal Information or ask us to delete it or restrict how we use it, please contact us at complaints@tourette.org.au

18. THIRD PARTY WEBSITES

18.1 The Online Tools may, from time to time, contain links to and from third party websites.

18.2 If you follow a link to / from any third party websites, you do so at your own risk, and subject to whatever privacy policy / website terms that govern the use of such websites.

18.3 TSAA does not accept responsibility or liability for the content of third party websites, or any information you provide to them.

19. CHANGES TO OUR PRIVACY POLICY AND YOUR ACCEPTANCE

19.1 Any changes TSAA may make to this Privacy Policy will be posted on this page. Please check back frequently to see any updates or changes.

19.2 Your continued use of the Online Tools will confirm your understanding and acceptance of this Privacy Policy and any changes made to it from time to time.

20. HOW TO WITHDRAW YOUR CONSENT

20.1 You can withdraw your consent to this Privacy Policy at any time. Please contact us if you wish to do so.

20.2 If you withdraw your consent, you acknowledge and agree that you are required to cease using the Online Tools and that we may no longer be able to provide or enable the provision of any certain products or services to you.

21. HOW TO COMPLAIN

21.1 Please let us know if you are unhappy with how we have used your Personal Information. You can contact us at complaints@tourette.org.au

22. CONTACT

22.1 Please let us know if you are unhappy with how we have used your Personal Information. You can reach us at complaints@tourette.org.au

22.2 You also have the right to complain to a relevant privacy regulator, and to potentially lodge an appeal if you are not happy with the outcome of a complaint. We hope that that won’t be ever required though.

22.3 Any other questions, comments and requests regarding this Privacy Policy should also be sent to complaints@tourette.org.au

23. DEFINITIONS

23.1 For the purposes of this Privacy Policy, the following terms shall have the following meanings:

23.1.1 “Access Device Information” means technical information about the devices you use to access TSAA’s services, including hardware models, operating systems and versions, software, file names and versions, preferred languages, unique device identifiers, advertising identifiers, serial numbers, device motion information and mobile network information.

23.1.2 “Applicable Law” means all national, state, local, municipal legislation, regulations, statutes, by-laws, approvals and/or other laws and any other instrument having the force of law as may be issued and in force from time to time (and any amendment or subordinate provisions) relating to, or connected with, the activities contemplated under this Privacy Policy wherever so located or performed.

23.1.3 “Personal Information” means data relating to a living individual who is or can be identified either from the data or from the data in conjunction with other information that is in, or is likely to come into, TSAA’s possession.

23.1.4 “Usage Information” means information about your use of the Online Tools, including your device IP address, access dates and times, app features or pages viewed, application crashes and other system activity, type of browser, and the third party site or service you were using before interacting with the Online Tools.

23.1.5 “Territory” means Australia.