Privacy Policy


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Privacy Policy

Mar 01, 2024


PWSA Privacy Statement

Prader-Willi Syndrome Australia Ltd (PWSA) is a person and family Disability Representative Organisation. We are committed to working together with our community to maximise opportunities and outcomes for people living with Prader-Willi syndrome (PWS), while protecting the privacy and confidentiality of all personal information which the organisation collects, holds and administers. PWSA respects everyone’s rights to privacy and any personal information collected by PWSA is managed in accordance with the privacy principles contained in the Australian Privacy Act (1988).

Our Privacy Statement (Policy) explains your rights under this Act. By continuing to use our sites (our websites and social media pages) you agree to these terms.

What information do we collect?

The personal information we collect from you may include: your name, address, telephone number, email, contact preferences, age, gender and your interest in PWS. We may collect information when you subscribe to our emails, send us emails, write to use, contact us regarding events, conferences, use our social media sites and when you donate. With your special consent we may collect photographs or audio and video recordings.

PWSA may also collect some information that is not personal information because it does not identify any individual. For example, PWSA may collect anonymous answers to surveys or aggregated information about visitors to the PWSA website.

How do we use your information?

We use your information to pursue the legitimate interests of our organisation, to communicate about our work and provide information about, and support people with PWS. All information will be used anonymously unless specific written permission has been granted to identify an individual in publications.

We may use your information in a number of ways including to provide you with information which you may be interested in concerning research, care, events and activities. We may also use your information to ask you to take part in surveys, fundraising activities or conferences or to inform submissions and/or publications on PWS related matters.

We may also use personal information to answer enquiries and resolve complaints and meet our workplace safety and disability support obligations.

PWSA may also use your information, after removing identifying details, to meet its reporting obligations.

When might PWSA disclose personal information?

PWSA will generally only disclose information for the primary purpose for which it was collected or a directly related secondary purpose where the individual would reasonably have expected us to use it for those purposes.

For other uses, PWSA will obtain consent from the affected person, unless the disclosure is required by law or the need for the disclosure (e.g. health & safety of individuals) outweighs the need for privacy.

You will not receive offers from other organisations or companies as a result of giving your details to us. We will not sell or pass on your information to any third parties.

How does PWSA keep personal and health information safe?

Personal information held by PWSA may be in either hard copy or electronic form. PWSA does its best to protect information from loss, misuse, unauthorised access, modification and disclosure. To do this PWSA uses procedural, physical and software safeguards.

The PWSA website and social media pages are linked to the internet which can be insecure. PWSA cannot provide any assurance regarding the security of transmission of information sent to us online. PWSA also cannot guarantee that information supplied will not be intercepted while being transmitted over the internet. Accordingly, any personal information or other information transmitted to PWSA online is transmitted at a person’s own risk.

PWSA requires staff to handle personal information with care and access only what they need to do their job.

PWSA destroys personal information when it is no longer required.

​How can you update your information or unsubscribe?

PWSA takes all reasonable steps to ensure the information collected about individuals is accurate, up-to-date and relevant to the functions and activities of the organisation.

PWSA, through membership emails, social media, etc. asks people to inform us when their personal information changes so we can update our records. Where possible or necessary, PWSA will check the accuracy of information before it is used.

​To update your details please email us at To be removed from our mailing lists please email us at or click unsubscribe on the latest email newsletter.

Cookie consent

​When you visit our websites and our social media pages (such as Facebook, X (formerly Twitter), YouTube), we use Cookies to collect information about your visit, including which pages you visit and how long you visit for. By using our sites, you agree that, unless you have set your computer browser to reject them, we will use that data to evaluate how our website is used, for example page visits and trends. Cookie data is anonymous. We do not link that information to the personal information we hold about you.

Links to other websites

This site contains links to other sites. PWSA is not responsible for the privacy practices or the content of these websites.


The Board of PWSA is responsible for adopting the Privacy & Confidentiality Policy.

PWSA’s Board, staff, contractors and volunteers are responsible for the implementation of the Privacy & Confidentiality Policy and Procedures.

The Board is responsible for monitoring changes in Privacy legislation and for reviewing the Privacy & Confidentiality Policy.

Privacy Policy updates

PWSA reserves the right to make amendments to this Privacy Policy at any time. If you have objections to the Privacy Policy, you shouldn’t access or use this site and its features, or PWSA social media channels.

Complaints regarding privacy and confidentiality

Any individual who has a complaint about how PWSA has handled their personal information should contact PWSA as soon as possible. PWSA aims to resolve complaints quickly and fairly.

If, however, PWSA cannot resolve the complaint directly a complaint can be lodged to the Office of the Australian Information Commissioner.


Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

Contact us