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Privacy Policy

Butterfly Foundation and its staff respect and are committed to maintaining the privacy of all individuals who we deal with. This policy (“Privacy Policy”) sets out how we deal with the collection, security, quality, use, handling and disclosure of your Personal Information (including Sensitive Information) in accordance with the Privacy Act 1988 (Cth) (“the Act”).

Your interaction with us and use of the Stories from Experience resource, or any other website through which you communicate with us  indicates that you accept this Privacy Policy, and consent to the collection and use by us of your Personal Information (including Sensitive Information) according to the terms of this policy.

The Stories from Experience resource maintained by The Butterfly Foundation, was developed by a project of the Australian Department of Health, called the National Eating Disorders Collaboration (NEDC). Here and there after any reference to NEDC, implies that responsibility lies with The Butterfly Foundation.


1. What type of data do we collect and hold?

From the Stories from Experience resource, Butterfly Foundation will collect:


2. How do we use the information we collect?

(a) Personal Information: The Personal Information you provide us may be used to identify trends in how individuals use the Stories from Experience resource. In accordance with article 10 of the Terms and Conditions, it should be noted that the Stories from Experience page will not be monitored by Butterfly Foundation and no responsibility can be taken for the use of personal information by third parties.

 (c) Non-Personal Information: Non-Personal Information may be used and combined with Personal Information to provide better services to users of the Stories from Experience resource and to administer and improve the resource for your use.


3. Who we disclose our information to

Personal Information as described above   is disclosed to Butterfly Foundation Staff for data collection on usage patterns and reporting purposes. Butterfly Foundation staff will have access to personal Information necessary to perform the clarified functions but may not use this information for other purposes.  When disclosing this information we may take reasonable steps to ensure that the recipient is bound by confidentiality and privacy obligations in accordance with the Act and this policy.

There are certain circumstances where we are entitled to disclose Personal Information (including Sensitive Information) without your consent, including if we believe there is a serious and imminent threat to the life, health or safety of yourself or the public, for legally permitted law enforcement activities, or where otherwise required or authorised by or under law. 


4. How can you access the personal information that we hold about you?  

We will take all reasonable steps to keep your Personal Information (including Sensitive Information) up-to-date and accurate. You have the right to request access to or correction of any information which relates to you and we will take the appropriate steps to provide you with access to correct information we hold about you.

If you would like to access a copy of the Personal Information (including Sensitive Information) we hold about you, or believe that the information we have is not up-to-date, complete or accurate, please contact us as specified below. 

When you contact us, please include your name/username and contact details and clearly describe your request or complaint.  We will respond within a reasonable period. If we decline your request to access that information or to correct it we will provide you with written notice setting out the reasons why your request has been refused and the mechanisms available to you to complain about the refusal.

If you would like your account on the Stories from Experience resource removed, you will need to send an email to the managing project, the NEDC, on from the email address registered to that account and state your username and name.


5. Complaints process

If you have any questions or concerns about our collection, use or disclosure of Personal Information (including Sensitive Information) or believe that we have not complied with this Privacy Policy or the Act, please contact us as set out below. We will investigate the complaint and determine whether a breach has occurred and what action, if any, to take. When contacting us, please provide as much detail as possible in relation to the query, issue or complaint. We will respond within a reasonable period.

Butterfly Foundation expects its procedures will deal fairly and promptly with your complaint. However, if you are not satisfied with our response or would like to make a formal complaint you may at any time refer your complaint to the Office of the Australian Information Commissioner (which is the regulator responsible for privacy in Australia).

Office of the Australian Information Commissioner (OAIC)
Complaints must be made in writing.

Phone: 1300 363 992


Director of Compliance

Office of the Australian Information Commissioner

GPO Box 5218

Sydney NSW 2001



6. How we protect your information

Butterfly Foundation has implemented a range of procedures to protect your Personal Information from modification, misuse, disclosure, loss and unauthorised access. This is done through our technology infrastructure, our internal risk management framework and security policies and procedures, and for all communications through our website via a secure server.

It is important to remember that no internet transmission is ever completely secure or error-free and the Sites may contain links or references to other websites to which this Privacy Policy might not apply. You should always read the privacy policy of every website you visit, especially when you provide Personal Information or make posts or other contributions to these sites. 


7. Duty of Care

Stories from Experience is not monitored. It has been designed to encourage users and those given access to a timeline to seek help where appropriate. The functions include:

Helplines and emergency contacts visible on all pages

Automated emails including helplines and support service information

You can share your timeline with someone you choose. This person is not liable or responsible for taking action should this content concern them.


8. Changes to this privacy policy

We may from time to time change this Privacy Policy and will post updated versions of this Privacy Policy on the Sites. Users of the Sites or our services are advised that continued use of the Sites or our services following any changes means you accept the changes, regardless of whether you have been given specific notice of the change.


9. How to contact us

For further information about our Privacy Policy, please contact us at:

NEDC  c/o The Butterfly Foundation

103 Alexander Street
Crows Nest NSW 2065
Phone: (02) 9412 4499


Need Help

Talk to someone right now.

Butterfly National Helpline 1800 ED HOPE

8am-12am AEST, 7 days a week (except national public holidays)

1800 334 673 Open chat Email Lifeline 13 11 14 (24/7)

In an emergency, please call 000