The information on this page details the privacy policy of The Myositis Association-Australia Incorporated (TMAA, We, Us, Our). TMAA is a not-for-profit organisation dedicated to providing a network of support for myositis patients and their families. The policy governs our management of health and personal information about you, which is collected by us, disclosed by you or others, or that we receive from you. This policy also sets out how you may access, and if necessary, correct, the personal information we hold about you.

1. Definitions

In this policy, the following definitions apply (as those terms are used in the Privacy Act 1988 (Cth)):
Health information includes:
(a) information or an opinion about:
(i) the health or a disability (at any time) of an individual;
(ii) an individual’s expressed wishes about the future provision of health services to him or her; or
(iii) a health service provided, or to be provided, to an individual, that is also personal information;
(b) other personal information collected to provide, or in providing, a Myositis support group service;
(c) genetic information about an individual in a form that is, or could be, predictive of the health of the individual or a genetic relative of the individual.
Personal information means information or an opinion about an identified individual, or an individual who is reasonably identifiable:
(a) whether the information or opinion is true or not; and
(b) whether the information or opinion is recorded in a material form or not.

2. Introduction

Personal information and your right to privacy
– 2.1 Protecting your privacy and the confidentiality of your personal and health information is very important to us. TMAA collects this information in order to provide support group services to you.
– 2.2 At TMAA, we understand that giving your personal and health information to us imposes a responsibility upon us. We are committed to protecting this information. Where your personal and health information may be disclosed, and to the extent that we can, we believe in giving you a choice as to whom it may be disclosed, who may use the information and how that information may be used.
– 2.3 TMAA must comply with the Privacy Act 1988 (Cth), and the Australian Privacy Principles (APPs) contained within that Act, in relation to its collection, storage, use, disclosure, access to and correction of your personal and health information.

3. Information collected by TMAA

– 3.1 As a support group service provider, TMAA collects personal information including health information.
– 3.2 The type of information TMAA may collect about you includes details of your:
(a) name, address, and telephone numbers;
(b) email address;
(c) age or date of birth;
(d) gender; and
(e) medical information.
– 3.3 We may collect this information directly from you or by phone or email, or we may collect that information from a relative or other third party (such as a carer) or through our Website. Information would only be collected from a third party where you have consented. If we collect information about you from a third party, we will take steps that are reasonable in the circumstances to make you aware that we have collected such information. The storage, use and of such disclosure information will be governed by this Privacy Policy.
– 3.4 We may also collect personal information about you from camera and other electronic systems which may record visual images and sounds at meetings or gatherings of the TMAA.

4.Storage of your personal information

The information we collect about you, including your medical diagnosis, may be kept on an electronic record system.

5. How we use and disclose your personal information

– 5.1 We collect your personal information to provide you with the support group services you expect from us including processing your membership application or donations, allowing access to the Website, sending invitations to events, complying with our reporting requirements, providing educational services, notifying you of clinical trial opportunities, communicating with you generally.
– 5.2 In most cases we will only use or disclose your personal information with your consent, however we may also use or disclose your personal information for purposes related or ancillary to the main purpose for which we collect it.
– 5.3 In some circumstances, we may also use or disclose your personal information if we are compelled to do so by law.
– 5.4 We may use data we collect for marketing and research purposes. Where we use that data for internal purposes (such as for determining the most effective means of marketing our services), we will de-identify that data wherever practical. Where we use data for direct marketing or for research purposes, we will first obtain your express consent to use your personal information for that purpose.

6. Overseas disclosure

Depending on the nature of the service we provide to you, sometimes it may be necessary to us to engage overseas third parties to store the personal information we collect, including your personal and/or health information. If this occurs, we will take all reasonable steps to ensure that the overseas third party complies with all necessary APPs.

7. Future contact and your privacy

From time to time we may use the personal information we collect from you to identify particular support group services or developments which we believe may be of interest and benefit to you. We may then contact you to let you know about these support group services or developments and how they may benefit you. If you do not wish to receive this type of information from us, please tell us.

8. Quality, accuracy and correction of your personal information

TMAA takes reasonable steps to ensure that the personal information we collect, use and disclose is accurate, complete, up-to-date, and relevant for our support group purposes. If you find that the personal information we hold about you is inaccurate, incomplete or out-of-date, please contact us immediately and we will take reasonable steps to ensure that it is corrected within a reasonable time.

9. Security of your personal information and data retention

TMAA takes reasonable steps to protect your personal information from loss, misuse, unauthorised disclosure or destruction. We have in place generally accepted standards of technology and operational security to keep your personal information secure. Only authorised people may access our records which store your personal information. While care is taken to protect your personal and sensitive information on our Website, unfortunately no data transmission over the internet is guaranteed as 100% secure. Accordingly, we cannot insure or warrant the security of any information you send to us or receive from us online.

10. Our web site and your privacy

We may collect personal information about you from our website when you submit a general enquiry via our contacts page, or send an online complaint or enquiry to our Privacy Officer. We may also collect information from your web browser, such as cookies.

– 10.1. Cookies
A “cookie” is a file of information that allows the TMAA servers (the computers that house our website) to identify and interact more effectively with your computer. When you access our web site, we send you a “cookie” that gives you a unique identification number. Cookies do not identify individual users or personal information about a user, although they do identify a user’s Internet browser type, number of visits to the TMAA website, and your Internet Service Provider. You can configure your Internet browser to accept all cookies, reject all cookies or notify you when a cookie is sent. Please refer to your internet browser’s instructions or help screens to learn more about these functions.

– 10.2. Information logged on our web site
When you visit the TMAA website, our servers may log information provided by your browser which may include:
• the type of browser and operating system you are using;
• your Internet Service Provider and top level domain name, for example, .com, .gov, .au, .asn etc;
• the address of any referring web site, for example, the previous web site you visited;
• the date and time of your visit; and
• your computer’s IP (Internet Protocol) address (a number which is unique to the machine through which you are connected to the Internet). This information may be used by TMAA for aggregated statistical analysis or systems administration purposes only. No attempt will be made to identify users or their browsing activities, except where required by or under law, inspection by law enforcement or other government agencies of our ISP logs.

– 10.3. Links to other sites
The TMAA website may, from time to time, contain links to other sites. In addition, some of the content appearing on the TMAA website may be supplied by third parties, for example, The Myositis Association in the U.S.A. While TMAA will always endeavour to engage in business arrangements with commercial entities of good repute and ethical business practices, we are ultimately not responsible for the privacy practices or the content of such web sites. However, we will seek to ensure that an equivalent level of privacy protection is afforded to you. We encourage you to read and understand the privacy policies on those web sites prior to providing any information to them.

– 10.4. Searches
Search terms you enter when using our search engine are collected, but are not associated with any other information that we collect. We may use these search terms
for the purpose of aggregated statistical analysis so we can ascertain what people are looking for on our web site, and to improve the services that we provide. Also, from time to time, we may use external companies to provide us with detailed aggregate statistical analysis of our web site traffic. At no time is any personal information made
available to these companies, nor is the aggregate information ever merged with personal information such as your name, address, email address or other information
you would consider sensitive or would compromise your privacy.

11. Access to your personal information

– 11.1. TMAA will, at your request, and subject to applicable privacy laws, provide you with access to your personal information held by us. We will deal with your request in a reasonable period after the request is made.
– 11.2. In certain circumstances, the law permits us to refuse your request to provide you with access to your personal information and for example in circumstances such as those set out in APP 12.3 and include:
• access would pose a serious threat to the life or health of any individual;
• access would have an unreasonable impact on the privacy of others;
• the request is frivolous or vexatious;
• the information relates to a commercially sensitive decision making process;
• access would be unlawful; or
• access may prejudice enforcement activities, a security function or commercial negotiations.
– 11.3. If any of these circumstances apply (or any other circumstance in APP 13 applies), or we refuse to provide you with access to your personal information for some other valid reason, we will provide you with a written notice that sets out:
(a) the reasons for the refusal (unless it is unreasonable to do so);
(b) the mechanisms available to you to complain about the refusal; and
(c) any other information we are required to provide to you by law.

12. Updates

We reserve the right to make changes to our Privacy Policy from time to time or as required by law. You can contact our Privacy Officer to obtain a copy of our most upto-date Privacy Policy.

13. More information

If you would like further details on any subject matter referred to or you wish to copy or reprint material for any purpose, you may contact the TMAA Privacy Officer by one of the following means:
• letter: Secretary, The Myositis Association-Australian Incorporated 14/10 Albany Lane Berry N.S.W. 2535
• email:
• telephone: 0421314138

You can also contact the Privacy Officer if:
(a) you have any questions or comments about this Privacy Policy;
(b) TMAA does not agree to provide you with access to your personal information, or refuses to correct your personal information;
(c) you have a complaint about our information handling procedures; or
(d) to obtain a copy of the most up-to-date TMAA Privacy Policy.

The Privacy Officer will respond to any request you make within a reasonable period of time. You can obtain further general information about privacy protection from the Office of the Federal Privacy Commissioner by:
• calling their Privacy Hotline on 1300-363-992; or
• visiting its website at:
• by writing to:
The Federal Privacy Commissioner GPO Box 5218
Sydney NSW 1042
The Myositis Association-Australia Incorporated