Privacy Policy
Last updated: 5 September 2026
 

Hypersomnolence Australia is committed to protecting your privacy and handling personal information responsibly. This Privacy Policy explains the types of personal information we may collect and hold, how we collect and use that information, and how you can contact us about your personal information or a privacy concern.
 

What information we collect

The information Hypersomnolence Australia collects depends on how you interact with us. It may include:
 

• your name and contact details, such as your email address;

• demographic information, such as your age, sex and state or territory;

• information about your experience of idiopathic hypersomnia, narcolepsy or other central disorders of hypersomnolence;

• health information, including information about diagnosis, symptoms, treatment and healthcare experiences;

• responses you provide through surveys, community consultations, forms or other activities;

• information you provide when registering for or participating in Hypersomnolence Australia activities or communities; and

• other information you choose to provide when communicating with us.
   

We only collect information that is reasonably necessary for our activities or that you choose to provide to us.
 

How we collect information

We generally collect personal information directly from you. This may occur when you:
 

• complete a survey, consultation, registration or other form;

• register for or participate in a Hypersomnolence Australia activity;

• contact us by email, through our website or through another communication channel;

• join a mailing list or request information from us; or

• otherwise choose to provide information to Hypersomnolence Australia.
   

Where appropriate, you may be able to participate in surveys or consultations without identifying yourself.
 

Why we collect and use information

Hypersomnolence Australia may collect, hold and use information to:
 

• understand the experiences, needs, concerns and priorities of people affected by idiopathic hypersomnia, narcolepsy and other central disorders of hypersomnolence;

• inform our advocacy, awareness and education activities;

• conduct community consultations and surveys;

• support or contribute to research and other projects relevant to our community;

• develop and improve our information and resources;

• communicate with people who have asked to receive information from us;

• organise and administer Hypersomnolence Australia activities and communities;

• contact people about further involvement in consultations, projects or other activities where they have agreed to be contacted; and

• carry out the activities and purposes of Hypersomnolence Australia.
   

We will not use identifiable information you provide through a survey or consultation for a different purpose without your consent unless we are required or authorised to do so by law.
 

Sharing your information

Hypersomnolence Australia does not sell personal information.
 

We do not share information that identifies you with researchers, organisations, companies or other third parties without your consent, unless disclosure is required or authorised by law.
 

We may publish or share findings from surveys and community consultations in reports, submissions, advocacy materials, presentations, social media, our website or other communications. Where we do so, information will be reported in a way that does not identify individual respondents unless they have specifically agreed to be identified.
 

We may use third-party service providers to help us operate our website, forms, surveys, email communications and other activities. These providers may process or store information on our behalf.
 

Storage and security

Hypersomnolence Australia takes reasonable steps to protect personal information from misuse, interference, loss, unauthorised access, modification or disclosure.
 

Information may be stored electronically by Hypersomnolence Australia or by third-party service providers used to operate our website, forms, surveys, communications and other activities. Access to personal information is limited to people who require it for the purposes for which it was collected.
 

However, no method of electronic transmission or storage is completely secure, and we cannot guarantee the absolute security of information transmitted or stored electronically.
 

We retain personal information for as long as it is reasonably required for the purpose for which it was collected or as otherwise required by law. When identifiable personal information is no longer required, we take reasonable steps to delete, destroy or de-identify it where appropriate.
 

Overseas storage and service providers

Some of the online services and third-party platforms used by Hypersomnolence Australia may store or process information outside Australia.

The countries in which information is stored or processed may vary depending on the services we use. Where practicable, we take privacy and security into account when selecting services that handle personal information.
 

Where a particular survey, consultation or activity involves information being collected or stored using an overseas service provider, we may provide additional information about this at the time the information is collected.
 

Accessing or correcting your personal information

You may request access to personal information Hypersomnolence Australia holds about you or ask us to correct information that is inaccurate, incomplete or out of date.
 

To make a request, contact us at info@hypersomnolenceaustralia.org.au
 

We may need to confirm your identity before providing access to or changing personal information.
 

Privacy questions or complaints

If you have a question or concern about how Hypersomnolence Australia has handled your personal information, or you believe your privacy has been breached, please contact us at admin@hypersomnolenceaustralia.com.
 

Please provide enough information for us to understand and investigate your concern. We will consider privacy complaints and respond within a reasonable period.

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If you are not satisfied with our response, you may be able to make a complaint to the Office of the Australian Information Commissioner.

For further information about privacy rights, please visit the Office of the Australian Information Commissioner.
 

Links to other websites

Our website may contain links to other websites. Links to other websites do not constitute an endorsement of the information, products or services provided by those websites.
 

Other websites are governed by their own privacy policies and practices. Hypersomnolence Australia is not responsible for the privacy or security of information you provide while visiting third-party websites.
 

Changes to this Privacy Policy

Hypersomnolence Australia may update this Privacy Policy from time to time to reflect changes to our activities, practices or legal obligations. The current version will be published on our website with the date it was last updated.

 

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Disclaimer

The content provided by Hypersomnolence Australia or its representatives is for information purposes only and is not a substitution for independent medical advice from qualified health professionals, the information is not intended to be relied on as medical advice or to be used for therapeutic purposes. Always seek the advice of health professionals in regard to the investigation, diagnosis, treatment, or prevention of any medical condition and/or symptoms you may have. Direct any questions or concerns you have about your health or medical care to your treating physicians and/or seek second opinions from other qualified health professionals. 

While due care is taken regarding the quality of the information provided, Hypersomnolence Australia or its representatives assumes no legal liability or responsibility as to the guaranteed accuracy, completeness, or timely manner in which information is provided, the way in which information is interpreted or the relevance of the information to your circumstances. 

Hypersomnolence Australia may provide or share third-party content in the form of links to other websites or articles for your convenience or consideration from our website, email correspondence, or social media platforms. This shared information does not necessarily constitute an endorsement of services or products provided by third parties nor do the content or opinions held within reflect those of Hypersomnolence Australia.

Hypersomnolence Australia or its representatives does not accept any liability for any injury, loss, damage, or costs incurred by the use of the information provided, any information provided that is relied upon is your responsibility and at your own risk.

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