1. Our privacy commitment

The Australian Mitochondrial Disease Foundation Limited A.C.N. 135 324 931 (Mito Foundation) is committed to protecting your privacy. We comply with our obligations under the Australian Privacy Principles (APPs) and the Privacy Act 1988 (the Privacy Act), which govern the way private sector organisations collect, use, secure and disclose Personal and Sensitive Information.

We strive to protect your privacy by:

  • ensuring that we manage your personal information openly and transparently
  • giving you the option to share your information anonymously or using a pseudonym
  • keeping you up to date with how we collect and use your personal information
  • letting you know how we deal with unsolicited personal information
  • letting you know if we ever need to disclose your personal information to anyone else (including anyone overseas) and if so, in what circumstances this might occur
  • promptly responding to any request by you not to receive direct marketing material from us
  • keeping your information secure, accurate, up to date and complete
  • ensuring that, where appropriate, you can access and correct your personal and sensitive information.

2. About this policy

This policy is intended to explain clearly and in plain language some of the key processes and procedures that we have implemented to manage your personal information, to protect your privacy and to comply with the Privacy Act and the APPs.

References to “our”, “us” and “we” in this policy are references to the Mito Foundation. Our website can be accessed through https://www.mito.org.au.

This policy gives a broad overview of our policies in relation to privacy. If you require further information or have any concerns with or complaints with the way your personal information has been managed by us, please reach out to us via the contact information provided in this Policy.

You should read this privacy policy before providing us with any personal or sensitive information or before using our website. By providing us with your personal information or by using our website, you are confirming your agreement to the policies and procedures described in this privacy policy.

3. What information we collect

We collect information only as necessary and relevant to our relationship with you, including to enable us to provide to you the best possible service and advice. The types of information we collect can include, but are not limited to your:

  • full name
  • date of birth
  • contact details (email address, telephone number, address)
  • credit card details
  • Sensitive Information: health information, including if you currently have, or had, a medical condition or disability, your medical diagnosis, including information about any treatment that was given to you, other demographic information such as racial or ethnic origin etc.

The Privacy Act places restrictions on collecting sensitive information. Accordingly, we only collect sensitive information from you where it is reasonably necessary for one or more of our functions or activities and if you have consented to the collection of this information.

4. Protecting your identity

Wherever it is practicable, we will provide you with the option to deal with us anonymously or to use a pseudonym to protect your identity. Due to the nature of our business however, it will usually not be practicable for us to deal with you anonymously or by pseudonym.

5. Why we collect your information

We collect your personal information for various reasons, including to:

  • allow access to, and use of our website, including to administer our website
  • contact you in relation to events and matters that may be of interest to you
  • assist us to run our business and to improve our services and performance, including staff training, accounting, risk management, record keeping and archiving, systems development and undertaking planning, research and statistical analysis
  • conduct research to better understand your needs, measure the impact of our work and support other projects related to our mission
  • prevent potentially prohibited or illegal activities, including fraud or other criminal activities
  • manage your employment with us
  • comply with our reporting and legal obligations.

There is no obligation for you to provide us with any of your personal information but if you choose not to provide us with your personal information, we may not be able to contact you or provide you with the services that you require.

By agreeing to accept the terms of this policy and in providing your personal information to us, you are taken to have consented to the use of your personal information for the above purposes.

6. How we collect your information

There are a few methods through which we may collect your personal information depending on the way in which we come in contact with you. We may collect your personal information from one or more of the following methods:

  • directly from you or an individual with the authority to provide your personal information (such as your family member/carer); either in person, over the phone/video call or by email
  • through our website
  • from publicly available sources such as the electoral role, (public) social media posts and blogs, other websites etc.

We endeavour to always collect your personal information directly from you unless it is impracticable to do so.

Cookies

Your personal information will not be collected if you are only browsing our website, but we do use cookies to better tailor our information and our services to meet your needs. A cookie is a small piece of text that is placed within the memory of a computer and can be later retrieved by web page servers. Cookies are used to enhance your interaction and convenience in using our website and we do not use cookies to record any of your personal information. Cookies may record information about your visit, including the type of browser and operating system you use, any previous websites you visited, your server’s IP address, the pages you access, and the information downloaded by you. While this anonymous statistical data may be aggregated and used in broader statistical analysis by us and our web monitoring service provider to improve our services, at no time can we personally identify you as the source of that data.

7. Collecting information about others

Where you provide personal information to us about another person, you represent to us that you are authorised to provide that information to us, and that you will inform that person about the contents of this privacy policy including who we are, how we use and disclose personal information, and that they can gain access to, and correct, that information.

8. Unsolicited information

From time to time, we may receive personal information about you that we have not requested or solicited (known as unsolicited information). In these circumstances, we will only hold onto such information only where it is necessary to do so and where permissible under the Privacy Act and the APPs. Information that is not required will be destroyed or de-identified to protect your privacy.

9. How we use or disclose your information

We may use or disclose your personal information for the purposes for which it was collected or for a directly related purpose such as to:

Manage our relationship with you:

  • manage your participation with us in volunteering, fundraising, advocacy and other activities where we seek the assistance of the community
  • provide you with updates on our research
  • communicate with you in general, including in relation to our upcoming events and our website
  • address or respond to your questions, comments and requirements, including to maintain our relationship with you
  • seek your feedback in relation to your satisfaction with us and our relationship with you

Raise Funds:

  • process any donations you make to us
  • get your feedback to refine our fundraising activities and communications
  • provide you with updates on how your gifts or donations are helping

Inform our work:

  • better understand your needs, analyse developments and trends in mitochondrial disease
  • facilitate and improve provision of our services and programs to you, including our website
  • provide you information in relation to mitochondrial disease, including in relation to risk factors
  • conduct and fund research into mitochondrial disease, as well as diagnoses, treatment and cures
  • contact you in relation to clinical trials, medical studies and surveys that may be of interest to you
  • inform policy development and advocate for change that will benefit the community

Other purposes:

  • resolve disputes or troubleshoot problems
  • perform administrative and operational tasks (including risk management, systems development, testing and staff training)
  • consider and resolve any concerns or concerns you may raise against us
  • lessen or prevent a serious threat to life, health, safety to any individual or to public health safety
  • allow our third-party service providers to assist us in providing and improving our services to you, including IT support and events planning

We maintain databases that store your personal information. We will always obtain your consent before we include your information in these. We always aim to ensure that the storage of your information adheres to strict standards of security and confidentiality.

Your information will be retained for as long as necessary to fulfill the stated purposes, and in accordance with the Privacy Act and APPs. You have the right to withdraw your consent at any time, which will lead to the cessation of use of your information for these purposes and its removal from our systems.

By agreeing to accept the terms of this privacy policy and in providing your personal information to us, you are taken to have consented to the use and disclosure of your personal information for the above listed purposes.

Other than as outlined above, we will not disclose your personal information without your consent unless such disclosure is permitted or required by law.

10. Sharing your information with others

We may share your personal information with entities related to the Mito Foundation.

We deal with third-party service providers who may assist us with a variety of functions including marketing, research, mail and delivery, security, insurance, professional advisory (including legal), banking, payment processing, credit reporting or technology services. We may also be required to share your information with regulatory bodies and law enforcement officials and agencies as required in relation to our services. Where we engage third-party service providers to perform services for us, those third parties may be required to handle your personal information. Under these circumstances, those third parties must safeguard this information and use it only for the purposes for which it was supplied, and we will make all reasonable enquiries to try to ensure that this is the case.

By providing your personal information to us, you consent to your personal information being shared with third parties as set out in this policy. We will not disclose personal information obtained from you to any third parties other than those set out in this policy unless you consent otherwise.

11. Sharing your information outside of Australia

We will only share your personal information outside of Australia:

  • if we are authorised to do so by law
  • for any of the purposes set out in this policy, and only to parties that are subject to obligations and regulations as rigorous as those set out in this policy
  • if you have consented to us sharing your personal information.

During our ordinary business operations, we may use technology that makes use of cloud infrastructure or servers that are located overseas.

12. Using your personal information for marketing

As part of the services that we provide to you, we may:

  • use personal information that have collected about you to identify information or a service that may benefit you or your family member/carer
  • contact you to let you know about information, event or service that we believe you might be interested in

Where you do not wish for your personal information to be used for direct marketing purposes, you can make a request not to receive direct marketing communications from us by reaching out to us via the contact information provided in this policy. Additionally, each direct marketing communication, including all emails, will include an opt-out or ‘unsubscribe’ option which will immediately indicate to us that you no longer wish to receive materials of this kind. If you make a request not to receive direct marketing communications from us, we will stop sending you these materials.

13. How we store your information

We hold your personal information in hard copy and/or electronic formats. We have in place reasonable commercial standards of technology and operational security to protect the information we hold from loss, misuse and interference and from unauthorised access, modification or disclosure.

We take all necessary steps to destroy or permanently de-identify your personal information when it is no longer required and to protect your personal information from loss, misuse and interference and from unauthorised access, modification or disclosure.

While we take all reasonable care to protect your personal information, unfortunately no data transmission over the internet is guaranteed as 100% secure. Accordingly, we cannot ensure or warrant the security of any information you send to us or receive from us online. This is particularly true for information you send to us via email as we have no way of protecting that information until it reaches us. Once we receive your personal information, we are required to protect it in accordance with the Privacy Act.

14. Maintaining your information

We take reasonable steps to ensure that the information that we collect about you is accurate, complete and up to date at the time of collection, use and disclosure.

15. How to access your information

Usually, we will be able to provide you with access to your personal and sensitive information upon receipt of your email request and confirmation of your identity. Emails should be sent to the email address provided in this policy. There are some limited circumstances in which we may not be able to provide you with access to your personal and sensitive information when requested. Such circumstances might include where access would be unlawful, pose a serious threat to the life, health or safety of another person or where such access would unreasonably impact on the privacy of others.

If we deny you access to your personal and sensitive information for any reason, or if we are unable to provide you with access to your information in the manner requested by you, then we will provide you with information confirming:

  • the reason for such refusal, and
  • the procedure to complain about the refusal

We may recover from you our reasonable costs for supplying you with access to your personal information, but we will not charge you for any request you might make to access your information.

16. Correcting your personal information

We do what we can to ensure that the information we hold about you is accurate, complete, up-to-date, relevant and not misleading. To assist us to do this, please ensure that you provide us with correct information at the time you provide it to us and immediately inform us if your details change at any time. If we are concerned that any of your information is inaccurate, incomplete, out-of-date, irrelevant or misleading, or if you request that we correct any of your information, then we will take all reasonable steps to correct the information to ensure that it is accurate, complete, up-to-date, relevant and not misleading in the context of the purpose for which it is held.

If we refuse to correct your personal information following a request by you to do so, then we will provide you with a written notice confirming:

  • the reason for such refusal, and
  • the procedure to complain about the refusal.

We will not charge you for any request to correct your personal information, nor will we pass on to you any costs incurred by us in correcting your personal information or for associating a statement with your personal information.

17. Complaints

We are committed to maintaining and protecting your privacy, but it is possible that in limited circumstances, mistakes might be made. If you are concerned with the way your personal information has been handled, then you are entitled to make a complaint. If you would like to lodge a complaint, please reach out to us via the contact information provided in this policy.

If your personal or sensitive information has not been handled in an appropriate way, we will do our best to remedy your concerns as quickly as possible. We aim to acknowledge receipt of your complaint within 48 hours and to resolve the complaint within 10 working days. Where this is not possible, we will contact you within this period to let you know an anticipated time frame within which your complaint aims to be resolved.

If your complaint is not satisfactorily resolved, you may approach an external dispute resolution service or apply to the Office of the Australian Information Commissioner (OAIC) to have the complaint heard and determined.

18. Our website

Our website may contain links to other applications or websites which are owned or operated by other parties. You should make your own enquiries as to the privacy policies of those parties. We are not responsible for information on, or the privacy practices of, such websites.

19. Requesting deletion of data

If you would like to request for your data to be deleted pleased reach out to us via the contact information provided in this policy, citing your name and email address.

20. Contact information

Please find below our contact details. Please do not hesitate to contact us in relation to any privacy-related concerns and we will strive our utmost to address any concerns thoroughly and in a timely manner.

Privacy Compliance Officer
Mito Foundation
Mailing Address: Suite 804, Level 8, 28 Foveaux St, Surry Hills, New South Wales, 2010
Email: info@mito.org.au
Phone: 1300 977 180

If it is practical to do so, you can contact us without identifying yourself. However, if you choose not to identify yourself, it may be more difficult for us to assist you with your enquiry. This will depend on the nature of your enquiry.

Please note that the Privacy Act contains certain exemptions which may permit us to use your personal and sensitive information in a particular way if specific circumstances arise. Any such exemptions under the Privacy Act will take priority over this privacy policy to the extent of any inconsistency.

21. Express consent to collection, storage, use and disclosure

In addition to the other consents provided by you above, by agreeing to accept the terms of this privacy policy, or by providing your personal information to us, you are taken to have expressly consented to the collection, storage, use and disclosure of your personal or sensitive information for each of the purposes and to all the parties outlined in this privacy policy.

22. Changes to this policy

This policy is subject to regular review and revision. We reserve the right to change our privacy policy at any time. Please check this policy on our website for any changes before providing us with your personal information.