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  1. Purpose 


 Endometriosis Australia cares about protecting your privacy and is required by law to comply with the Privacy Act 1988 (Cth) (the Act), including the  Australian Privacy Principles (APPs). We take our privacy obligations seriously and this Policy outlines our privacy practices. It explains how: 

    (a) we collect, manage, use, store and secure your personal information 

    (b) you may access and request correction of any record containing your personal information 

    (c) you may make a complaint about a breach of privacy. 

  2. Scope 

 The Policy applies to our staff, volunteers, contractors and suppliers who handle personal information collected by Endometriosis Australia (we, us, our). It  applies to personal information for individuals that are external to us such as donors and suppliers (you, your). By providing your personal information to  us, you consent to the use, storage and disclosure of the personal information you provide to us as described in this Policy. 

  3. How we manage your Personal Information 

    We will: 

  • take all reasonable steps to ensure we are open and transparent about the way we manage your personal information 

  • maintain adequate security of personal information to seek to protect it from misuse, interference and loss from unauthorised access, modification or disclosure 

  • establish reporting channels to receive privacy inquiries from you and for reports of privacy breaches to be received and acted upon 

  • conduct risk assessment for all new and significant business projects which consider privacy impacts 

  • provide an option for you to use a pseudonym or otherwise be anonymous unless it is impermissible, impractical or inhibits the adequacy or quality of service provided to you 

  • ensure compliance with the APPs and report on privacy issues to our Executive Committee and the Board Finance and Audit Committee 

  • provide this Policy free of charge and in an appropriate form for public access 

  • provide relevant work training and privacy awareness on how the APPs apply to us and how they are reflected in privacy practices, procedures and systems 

  • periodically review this Policy as well as the privacy practices, procedures and systems across our organisation to ensure that they remain appropriate to the changing environment we operate in and will notify you by, informing you in our regular communications or posting an updated version of this Policy on our websites. 


  4. Personal Information we collect and hold 

  4.1 Kinds of Personal Information 

   We will only collect information about you that is reasonably necessary for our functions or activities which are listed under point 4.3. This may include: 

  • your name, address, contact and bank and credit card details for donors, volunteers, and suppliers

  • your image, video and sound recordings 

  • information associated with web browsing, email, text messaging, phone calls or other electronic interaction with you including your phone number and user name 

  • for donors, details relating to your donations and information relevant to the purpose of better identifying donor sources 

  • sensitive information about you that may include your gender, age, date of birth, health, and other particulars that are relevant for the proper provision of the services that we provide 

  • survey and questionnaire responses

  4.2 How we collect and hold Personal Information 

 Where possible, personal information is collected directly from you with your consent at the time of your interaction with us. In some instances personal  information is received from third parties who obtain your personal information from publicly available sources.  

 Personal information may be collected in hard copy form or electronic form. Hard copy records are required to be held securely. We hold electronic  records in databases with security safeguards. 

 Where consent to collection is sought, it is sought voluntarily from you and we will inform you of what you are consenting to.  Our consent agreements  are current and specific to the service to be provided to you. 

 We will not collect sensitive information about you unless you have consented; it is required by law; or in other special specified circumstances, for  example relating to health services provision and individual or public health or safety.


  4.3 Purposes for which we collect, use and disclose Personal Information


  We collect, hold and use personal information only for the primary purposes for which it was collected or as set out below including: 


  • to provide services which may include volunteering, research and fundraising. Personal information may be shared between more than one legal entity within Endometriosis Australia to provide, expand or improve the services we provide to you or assist with more efficient service delivery 

  • to operate fundraising and charitable activity in support of our objectives 

  • to provide customer service functions, including handling customer enquiries, complaints and feedback 

  • to facilitate proper governance processes such as risk management, incident management, internal audit and external audits 

  • to gather feedback from you and other individuals about the quality of services that we provide so that the services we provide can be continuously improved 

  • to undertake marketing, fundraising and promotional activities, including activities to better identify donor sources, events and conferences organised and held by us 

  • to satisfy legal obligations, comply with applicable laws and meet the requirements of bodies which regulate the services we provide 

  • to understand, through aggregated information, trends and patterns which we use for research and advocacy 

  • to fulfil other purposes which you have consented to.


4.4 Disclosure to third parties


  We will not disclose your personal information to other external organisations except: 


  • as required by law 

  • where we have your consent to do so through your acceptance of this Policy and the disclosure relates to the goods or services we provide to you 

  • for a purpose permitted by this Policy; or 

  • if you request us to do so. 


  Examples of organisations and/or third parties that your personal information may be provided to include:


  • third party service providers who assist us with fundraising activities or strategy, identifying donor sources or analysis of our fundraising activities, strategy or patterns (including data collectives) 

  • third parties who assist us with co-ordination of volunteers, community activities and advocacy 

  • government or non-government agencies where we have a reasonable concern regarding your safety or wellbeing 

  • third parties who collate and/or analyse information for the purposes of research and advocacy 

  • third parties for the electronic storage of information, some of which may be overseas 


 Whilst we seek to ensure through our contracts with external parties that they comply with the Act regarding the use of your personal information, we  have limited control around how some external parties (for example, government agencies) use your personal information. 

  4.5 Opt‐outs

 If you do not wish to receive marketing or promotional communications from us, you should ‘unsubscribe’ online where a link is provided. In other  circumstances, you should contact us on the email addresses below and we will cease the relevant marketing or promotional  communication:

  5. How you can access and correct your Personal Information 

  5.1  Access 

 You are entitled to request access to the personal information held by us about you. This is generally provided upon your request subject to  completion of our verification and risk processes and to access restrictions imposed or permitted by law. Requests are made to the same point of  contact to whom you provided your personal information. 


  5.2 Correction 

 Where you inform us that information held by us about you is inaccurate, out-of-date, incomplete, irrelevant or misleading, we will correct it where we  agree with you. Notices by you to us to amend information held about you are made to the same point of contact to whom you provided your  personal information. 

 If, having received and considered an application from you to amend your information, we do not consider that the information should be amended,  we will not amend it but we will include a note with the information that you consider that it should be amended, and advise you accordingly. 

  6. Overseas Disclosure 

 We may store personal information that we collect about you with third parties who store it overseas for our use. We do not disclose personal  information about you overseas without your consent. However, we may use overseas or cloud-based data hosting facilities which may result in personal  information provided to us being transferred to, and stored at, a destination outside Australia, including but not limited to the United States of America. 

 You are taken to expressly agree and consent to the transfer, storing or processing of your personal information outside of Australia in submitting it to us.  In providing consent, you understand and acknowledge that countries outside Australia do not always have the same privacy protection requirements  as Australia in relation to personal information. 

 If you do not agree to the transfer of your personal information outside Australia, you should contact us on the below details. 


 Post:  Endometriosis Australia, PO Box 1070 North Sydney NSW 2059 

  7. Retention of personal information 

 We will retain your personal information in accordance with applicable laws or requirements of any government or other funding body’s record-keeping  requirements. 

  8. Mandatory Notifiable Data Breaches 

 We will comply with the notification and other requirements of the Act where your personal information held by us has been inadvertently lost or  disclosed or improperly accessed and that loss, disclosure or access may result in serious harm to you. 

  9. What to do if you have a privacy enquiry or complaint 

 If you have an enquiry or a complaint concerning collection, use or management of your personal information, please direct your enquiry or complaint  to the staff member who is your ordinary contact. Our staff will outline options regarding how your enquiry or complaint may be resolved. We will aim to  respond and resolve your enquiry or complaint in a timely and appropriate manner.  If we don’t, you may take it to a more senior manager including the  Chief Executive Officer.

 Where none of the above approaches by you has resolved the issue, your enquiry or complaint should be put into writing and forwarded to: 

 Endometriosis Australia Chairperson 

 PO Box 1070, North Sydney NSW 2059

 or email:  

 We will treat your enquiry or complaint confidentially. You may contact the Australian Information Commissioner wherever you believe that your  rights to privacy have been breached by us. 

Download our Privacy Policy Here

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