PURA Foundation Australia 

 Data Protection and Privacy Policy

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This policy document sets out how the PURA Foundation Australia collects, stores, and uses the personal data you share with us, for example when you send us contact information, fundraise for us, make donations, or provide images for our website. It describes the information we collect, how long we will retain it for, who will have access to it and your rights, such as your right to access the information we hold about you.

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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.

Where information relates to a child, it is collected from a parent or legal guardian. We may also collect limited health-related information (for example, relating to a diagnosis of PURA syndrome). This information is treated as sensitive information under applicable privacy laws and handled with additional safeguards.

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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 about relevant PURA syndrome research conducted by external organisations

• PURA Foundation Australia funded initiatives

• PURA Foundation Australia periodic newsletters and reports

• Information about fundraising activities

• 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.

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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 as long as is 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.

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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 can 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 a number of 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 our website purafoundation.au regularly for any changes.

Data Protection and Privacy Policy

Who we are 
We are the PURA Foundation Australia.

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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 purafoundation.au;
‘Personal information/data’ is information that can be used to identify a living individual, for example name, address, telephone number or email address.

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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.

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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.

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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 https://www.eugdpr.org/

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.

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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.

What information do we collect?

We collect various different types of personal information:

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1. Family and professional Information

Your contact details, including your full name, address, email address, telephone number, country you are living in and the name and date of birth of your PURA family member, will be collected and stored. This information only occurs with your consent, gained when you first provide the data. The information you provide to us, will be stored in our electronic database.

We may also collect some information that is not personal information because it does not identify you or anyone else. For example, we may collect anonymous answers to surveys or aggregated information about how users use our website.

We only collect this information from you if you choose to provide it to us. You can ask us to delete or change your data at any time by emailing us at info@purafoundation.au

Our basis for collecting and storing your name, address, email address, telephone number and country you are living in, enables us to:

• Answer your question(s)

• Communicate with you about new research opportunities

• Provide you with PURA Syndrome research updates

• Send you periodical newsletters, fundraising updates, and other PURA related news
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We collect contact information from clinicians and researchers in order to provide contacts for PURA families and their treating doctors. You can choose to terminate this contact information and/or have your data altered or deleted at any time by emailing us at info@purafoundation.au

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2. When you make a financial transaction, such as a donation.​

We collect information about our sources of income in order to produce accurate financial statements and to comply with the law relating to the retention of financial data.

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The Foundation uses Grassrootz and Stripe Inc to process our donations. When you donate via Grassrootz or Stripe Inc we collect certain information to enable us to process the transaction. This information includes your name, address, email address and credit/debit card details, reason for donation (if provided) and amount of donations made. When donating, each donor has the option of anonymity. We recommend that you consult the data protection policies on both the websites of Grassrootz https://grassrootz.com/privacy-policy/ and Stripe Inc https://stripe.com/au/privacy for detailed information about their data processes.

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If you make a payment or a donation by any other method, e.g. post, cheque, cash, we retain a record of financial transaction. This is shared with our chosen auditors and if we are legally required to disclose it, to the relevant authorities. By voluntarily submitting your personal information to us, you are consenting to the use of your personal information for effecting a payment or donation.

3. When you fundraise or volunteer for the Foundation.​

We collect and store your contact details, including your name, address, telephone number and email address, plus any other information you provide voluntarily, such as your reason for fundraising/volunteering. We also store details of your online fundraising page(s) and the event(s) you are taking part in or the fundraising/volunteering/awareness-raising you are undertaking.

Our bases for collecting and storing this data are that this meets our legitimate interests; to raise the funds we need to meet our mission. We also need to maintain accurate financial statements and taxation records.

When contacting us about fundraising or volunteering, we will store emails you send us. We collect this information to enable us to send administrative messages, to thank and support you, send you fundraising materials and contact you in case of query. This information also enables us to meet our legal requirements to accurately produce accounts/ financial statements.

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4. When you agree to be contacted by the PURA Foundation Australia about other topics and updates.

We also ask families for their consent for us to:

• Communicate with you about new research opportunities

• Provide PURA syndrome research updates

• Send out periodical newsletters, fundraising updates, and other PURA related news

You can choose not to be contacted about these topics at any time by emailing us at
info@purafoundation.au

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5. Research and External Studies

PURA Foundation Australia does not conduct scientific or clinical research and is not a research institution. We may share information about research studies and connect families with external researchers. Participation in any research is entirely voluntary and is managed directly between you and the organisation conducting the study.

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PURA Foundation Australia does not obtain consent for research participation, does not collect or manage research data, and is not responsible for the design, conduct, or oversight of any external research. All research studies are conducted by independent organisations, such as universities, hospitals, or research institutes, which are responsible for obtaining ethics approval and informed consent.

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If you choose to participate in a study, the collection, use, and storage of your information will be governed by the policies and consent processes of the organisation conducting that research.

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6. When you agree to provide images and/or your personal story to the PURA Foundation Australia.​

Parents of children or individuals with PURA syndrome in Australia have the option to provide us with a personal story and/or images of their child. This includes use of the personal story and/or images on:
 

• The purafoundation.au website

• In social media pages specifically operated by the PURA Foundation Australia

• In promotional and fundraising materials for the Foundation, both online and printed

• In educational materials, both online and printed.
   

By agreeing to this, you waive any rights of financial compensation or ownership of what you provide us. You can choose to remove your personal story or image at any time by emailing us at info@purafoundation.au

By providing images and/or personal stories, you confirm that you have the authority to do so and consent to their use as outlined above. You may withdraw your consent at any time. Upon withdrawal, we will cease future use of the material; however, materials already published or distributed cannot be fully withdrawn.

 

7. PURA Foundation Australia Committees.

When contacting members of the PURA Foundation Australia board or committees, we may store any emails you send us. The information you provide us with will be kept confidential and will not be shared with any other party. Unless we have your consent or except as required by law, we will not share your personal information with any person or entity other than those affiliated with PURA Foundation Australia; entities acting on behalf of PURA Foundation Australia or relevant third parties such as PURA Foundation Australia committees.

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8. Each time we process your data, we must have a ‘Legal Basis’ for doing so.​

GDPR (EU Regulation 2016/679) states that in order to collect, store or process different categories of data, organisations who are ‘data controllers’ need to meet one or more of a number of ‘legal bases for processing’ data. This includes Specific, Informed Consent (i.e. where you have given your consent, such as when you join us as a member or agree to us contacting you about other relevant topics), Meeting our legitimate interests as a charity (except where this would override your individual rights or interests), Meeting our Legal Requirements (e.g. to maintain accurate financial statements under the Companies Act, 2006) and Carrying out the requirements of a Contract.  For further information about these legal bases for processing data, please see the EU GDPR information portal at https://www.eugdpr.org/

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9. Data Security and Access.

Keeping your data safe - The PURA Foundation Australia will hold your personal information in confidence. The PURA Foundation Australia will take all reasonable measures ensuring that your information is not compromised in any way. As the information you provide us is of a personal nature, we safeguard your privacy by storing this information on password-protected drives. However, we cannot guarantee that such security measures will be sufficient, will not be breached, and that your personal information may not be disclosed or otherwise accessed in an unauthorized manner. Certain information may be transmitted to you by electronic mail.

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To the extent permitted by law, PURA Foundation Australia is not liable for any unauthorized access to, loss of, or misuse of personal information.

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We have a contractual relationship with a provider of bulk email and storage services and store limited data on their secure servers to enable us to communicate with you cost effectively.  While we cannot absolutely guarantee that loss, misuse or alteration of data will not occur, we use our very best efforts to prevent this.

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Google
Google Analytics uses cookies and usually stores them outside of the Australian and EU/EFTA area. Google uses this information to evaluate the use of the website for PURA Foundation Australia and to compile reports on website activities and the use of the Internet. In addition, Google states that it transmits this information to third parties if this is required by law or if third parties process the data on behalf of Google. The IP address transmitted by the browser in the context of the use of Google Analytics is not combined by Google with other data.

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Website
On the basis of statutory requirements, the PURA Foundation Australia website contains information which permits rapid electronic contact with the Foundation and also direct communication with us via a general address by electronic mail (email address). If a data subject contacts the Foundation by website-initiated email or via a contact form, the personal data transmitted by the data subject will be automatically stored. The personal data which has been voluntarily transmitted to the Foundation by the data subject will be stored for the purposes of dealing with enquiries or communicating with the data subject. The personal data will not be passed on to third parties.

The PURA Foundation Australia uses the Wix platform to create and maintain its website. The Privacy Policy for Wix.com can be located at https://www.wix.com/about/privacy.

 

Social Media
Social media platforms generally collect personal data in performing their services to platform users. The purpose and scope of such data collection and the further processing and use of the data by the social networks, as well as the user’s rights in this regard and the setting options for the protection of the user’s private sphere, are set out in the data protection provisions of the social platforms. The user can prevent the social networks collecting data about the websites he has visited by logging off before visiting the websites.

 

Data Breach Notification

In the event of a data breach that is likely to result in serious harm, PURA Foundation Australia will comply with its obligations under the Notifiable Data Breaches scheme under the Privacy Act 1988 (Cth). This includes notifying affected individuals and the Office of the Australian Information Commissioner (OAIC) where required.

Who can access your data?
The PURA Foundation Australia directors and officers of the board have access to your basic personal information. Unless we have your consent or except as required by law, we will not share your personal information with any person or entity other than those affiliated with PURA Foundation Australia; entities acting on behalf of the PURA Foundation Australia or relevant third parties such as PURA Foundation Australia committees.

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We may also use third party companies to provide services on our behalf. This could include services such as bulk email services, so we can communicate with you in the most cost-effective way. In these cases, data will be stored on the third parties’ servers, and we will ensure that we have undertaken appropriate due diligence and have agreements in place which commit them to high levels of data security and confidentiality. However, we cannot guarantee your email, or any attachments will be encrypted.

Some of our third-party service providers, including payment processors and website providers, may store or process data outside of Australia. We take reasonable steps to ensure that any overseas recipients handle personal information in accordance with applicable privacy laws and maintain appropriate data protection standards.

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We may disclose personal information if required to do so by law or if we have reasonable grounds to believe that such action is necessary to protect and defend the rights, property or the personal safety of the Foundation.

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10. How long do we keep your information?​

We keep your information only for as long as is necessary to provide you with the services and information needed to support you, unless and to the extent that a longer time is required by law.

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Financial records, including donations, are retained in accordance with Australian legal and taxation requirements. Contact and engagement information is retained until you withdraw your consent or it is no longer required.

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We will contact families every three years to review and update the information we hold. You may request deletion of your data at any time.

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11. Your Rights.​

Under the GDPR, individuals have a number of rights concerning their personal information and we will adhere to these:

You have the right to be informed about how and why we collect, store and use your information. We will do this when we collect your information, or when you sign up to receive emails through our website. This Privacy Policy is available on the PURA Foundation Australia website. 

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You have the right to access the personal information we hold about you. You can request this verbally or in writing and when we receive such a request, we will endeavour to respond quickly but within a maximum of one month. This is called a Subject Access Request (SAR) and there is no charge.

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Following this you have a right to request that any data held about you that you feel is inaccurate is rectified or completed if incomplete.

You also have the ‘right to be forgotten’, i.e. for all data we hold about you to be erased and also to require us to restrict or ‘suppress’ how we use your data (you might for example be happy for us to store it but not process it for certain purposes). Again, we will respond as quickly as we can to such requests but within a maximum of one month.

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To make a request, for example to access the information we hold about you, email us at info@purafoundation.au   For help and guidance about any aspect of the law relating to privacy and data protection, visit the EU GDPR information portal at https://www.eugdpr.org/

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If you have a concern or complaint about how your personal information has been handled, please contact us at info@purafoundation.au.

If you are not satisfied with our response, you may lodge a complaint with the Office of the Australian Information Commissioner (OAIC).

12. Website links.​

The PURA Foundation Australia’s website purafoundation.au may contain links to selected websites which we feel may be of interest. Please note that once you use one of these links to leave our website, we do not have any control over that other website. Please exercise caution and refer to their privacy policy and/or terms and conditions of use before providing any personal information as we cannot be held responsible for the protection or privacy of any information you provide to a third party.

The PURA Foundation Australia website may be used for personal, non-commercial informational or entertainment purposes only. You may not copy, reproduce, reuse, retransmit, adapt, publish, frame, post, upload, modify, broadcast or distribute any website content in any way, including for any public or commercial purpose whatsoever, without our prior written permission. You may not use any third parties' likenesses, names, images and/or properties without their express permission.   Please email us at info@purafoundation.au with any questions regarding this.

13. Changes to this Policy.
We may make changes to this policy from time to time, for example to update it to reflect changes in the law or guidelines from appropriate regulators. Please check our website purafoundation.au regularly for details of any such changes.
 

Printed copies of this document are considered uncontrolled.
Please refer to the PURA foundation website for the latest version.

PURA Foundation Australia V2 April 2026   www.purafoundation.au