top of page

Be the change you wish to see in the world.     #PURAfoundation

Data Protection and Privacy Policy Summary

Policy Summary

This policy describes how the PURA Foundation Australia collects, stores, and uses the personal information you share with us. It describes what information we collect, how long we will retain, who will have access to it and your rights.

We collect personal information allowing us to contact you, including your name, child’s name, address, and email. We may use this contact information to send you:

  • Updates for research projects being conducted and supported by the PURA Foundation Australia and members of our Clinical and Scientific Advisory Team.

  • Opportunities to be included in new research involving the PURA Foundation Australia

  • PURA Foundation Australia periodic newsletters and reports

  • Information about fundraising activities and other PURA syndrome-related news

We collect information about our supporters, fundraisers, and volunteers to enable us to contact you about your fundraising, donations, volunteering and buying merchandise and to meet our legal requirements to maintain accurate financial records. We only collect the information we need to provide the best possible service to the PURA syndrome community.

Data provided when you first contact the PURA Foundation Australia is stored for as long as necessary. Other data, such as financial records of donations, are retained if necessary to meet our legal requirements. For purposes other than our support services (e.g. fundraising, volunteering) we will seek to check your consent (to contact you) every three years.

We protect the security of the data you provide us, including using encryption technologies and secure backups. The data storage company has robust policies in place, and we would be happy to share these with you on request.

We will never sell or otherwise share your personal data with third parties for marketing purposes. Personal (i.e. identifiable), data would only be shared for other purposes if we were required by law to do so or we had your explicit, express consent. You have several rights, including the right to access the data we hold about you and the right to ask us to delete all data we hold about you at any time.

We may change this policy from time to time, e.g. to react to changes in the law or guidelines from appropriate regulators. Please check regularly for details of any changes.

Who we are 
We are the PURA Foundation Australia. The PURA Foundation Australia is a charitable organisation, registered in Australia as a tax-exempt non-profit corporation. The Foundation supports and educates individuals and their families, providing community. Governed by volunteer board members, the Foundation provides the Australian and New Zealand PURA community with a place to belong.

For those isolated by rare disease, the Foundation provides access to medical research and educates people about the condition. We keep our families informed by organizing events, developing educational material, and sending out newsletters.

In this policy, ‘we’, ‘us’, ‘our’ or ‘Foundation’ refers to the PURA Foundation Australia;
‘you’ or ‘your’ means any person(s) from or about whom we collect personal information/data;
‘Our website’ refers to;
‘Personal information/data’ is information that can be used to identify a living individual, for example name, address, telephone number or email address.


Your privacy 

Protecting your privacy is one of our top priorities. Please take a few minutes to read the following carefully to understand our views and practices regarding your personal data and how we treat it.

We respect your rights to privacy under the Privacy Act 1988 (Cth), Privacy Data and Protection Act 2014 (Vic), Health Records Act 2001 (Vic) and we are committed to the requirements in respect of the collection, management, and disclosure of your personal information under the privacy laws.

We also adhere to the Principles of the General Data Protection Regulation (GDPR) and relevant European Union Data Protection Directives such as the Privacy and Electronic Communication Regulations (PECR). For help and guidance about any aspect of the law relating to privacy and data protection, visit the EU GDPR information portal at

Our privacy commitment 

This document sets out the basis on which the PURA Foundation Australia will process any personal data we collect from you. We will make every effort to protect your privacy by adopting company policies on the storage and use of personal information. This privacy policy has been developed in accordance with our legal support and may be updated from time to time. We will post revisions on our website.


Language of terms 

Where this Privacy Policy has been translated into a language which is not English, that has been done for your convenience only to aid your interpretation of our policy. The English language version shall prevail in the event of any conflict between the English language version and a version in any other language.

For full Data and Privacy Policy download above or click here.

We Need Your Support Today!

bottom of page