The Australian Chapter of BDSRA

The BDSRA is committed to ensuring that your privacy is protected.  You should check this page when you use the website to ensure that you are happy with any changes to this Privacy Policy.  

Accordingly, we have developed this Policy in order for you to understand how we collect, use, communicate and disclose and make use of personal information. The following outlines our privacy policy.

·       Before or at the time of collecting personal information, we will identify the purposes for which information is being collected.

·       We will collect and use of personal information solely with the objective of fulfilling those purposes specified by us and for other compatible purposes, unless we obtain the consent of the individual concerned or as required by law.

·       We will only retain personal information as long as necessary for the fulfilment of those purposes.

·       We will collect personal information by lawful and fair means and, where appropriate, with the knowledge or consent of the individual concerned.

·       Personal data should be relevant to the purposes for which it is to be used, and, to the extent necessary for those purposes, should be accurate, complete, and up-to-date.

·       We will protect personal information by reasonable security safeguards against loss or theft, as well as unauthorized access, disclosure, copying, use or modification.

·       We will make readily available to customers information about our policies and practices relating to the management of personal information.

We are committed to conducting our business in accordance with these principles in order to ensure that the confidentiality of personal information is protected and maintained.

What the BDSRA collects:

The BDSRA may collect the following information:

  • Fundraising event details including contact information and email address,
  • Photographs of children provided by their parent/guardian;
  • Other information relevant to Batten Disease.

Controlling your information:

You may choose to restrict the use of your personal information by removing details upon request.

The BDSRA will not distribute your personal information to third parties unless we have your permission.

If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible. We will endeavour to promptly correct any information found to be incorrect.

Copyright Policy

  • Copyright in the text, images, software, logos, icons, sound recordings and HTML code, content and other copyright material in this website is owned or licensed by the BDSRA for use on this website;
  • The site contains material which is owned by or licensed to us.  This material includes, but is not limited to, the information content and photographs.  Reproduction of this material is prohibited other than for your own personal, non-commercial use, provided that the material is not altered in any way and no trademark, copyright mark or other proprietary notice is removed from the material in question;
  • No other use of material on the site is permitted other than with the express written permission of the copyright holder;
  • Unauthorised use of the site may give to a claim for damages and/or be a criminal offence.