AAN Support Services Privacy Policy

Australian Amyloidosis Network Ltd

  1. Introduction

We understand that reaching out for support can be hard.

Your privacy matters. You control what you choose to share with us. Our priority is your safety, dignity, and wellbeing.

This Privacy Policy explains how we look after your personal information when you contact or use the AAN Telephone Support Service or AAN’s peer support network.

This policy applies to people living with amyloidosis, carers, family members, supporters, and anyone who contacts our telephone support service or peer support..

The Australian Amyloidosis Network Ltd (AAN) is committed to protecting your privacy and handling your personal information in accordance with the Privacy Act 1988 (Cth) and the Australian Privacy Principles.

This Privacy Policy explains how we collect, use, store, and disclose your personal information when you use our support services and engage with peer support.

We do not provide your information to third parties. We never rent, sell, lend or give away your information.

  1. Information We Collect

We may collect the following types of personal information:

2.1 Information You Provide

    • Your name (you may remain anonymous or use a pseudonym)
    • Age or age range
    • Contact details and location information
    • Information about your health, wellbeing, and other relevant circumstances you disclose
    • Other relevant information you share with our telephone counsellors.

2.2 Information We Collect Automatically

    • Call date, time, and duration and  telephone number
  1. How We Collect Information

We collect information directly from you and through our phone systems and our website.

  1. Why We Collect and Use Your Information

We collect and use your personal information to:

    • Provide support services
    • Improve the quality of our services and to train and supervise support staff and volunteers
    • Maintain accurate records
    • Comply with legal obligations
    • Conduct research and analysis (using de-identified data)
    • Report to funders and stakeholders (using de-identified data).
  1. Anonymity and Confidentiality

You have the right to access our services anonymously or using a pseudonym. Our counsellors do not require your name, address, or other identifying information unless:

    • It is necessary to provide you with appropriate support
    • It is required by law.

AAN’s telephone support sessions are confidential See section 7 for disclosure information.

Peer support is a group activity and information is shared freely among the group participants during sessions.

  1. How We Store Your Information

We take reasonable steps to protect your personal information from misuse, interference, loss, unauthorised access, modification, or disclosure by:

    • Storing electronic records on secure, password-protected systems
    • Limiting access to authorised personnel only
    • Maintaining physical security measures for paper records
    • Regularly reviewing and updating our security practices and this policy
    • De-identifying information where possible.

We retain your information only for as long as necessary to fulfill the purposes outlined in this policy or as required by law.

  1. When We May Disclose Your Information

We will only disclose your personal information as follows.

7.1 With Your Consent

We may share information with your healthcare providers or other services with your explicit permission.

If you seek assistance to become a member of AAN or wish to make a donation we may provide your contact details to the appropriate AAN officer.

7.2 In Emergency Situations

We may disclose information without your consent if we reasonably believe there is imminent risk of harm to you or others.

7.3 Legal Requirements

We may disclose information when required or authorised by law.

  1. Quality and Accuracy

We take reasonable steps to ensure the personal information we collect and use is accurate, complete, and up to date. You can help us maintain accurate records by providing correct information and notifying us of any changes.

  1. Your Rights

You have the right to:

9.1 Access or Update Your Information

You may request access to the personal information we hold about you. If you believe information we hold about you is inaccurate, out of date, incomplete, or misleading, you may ask us to correct it.

9.2 Make a Complaint

If you believe we have breached your privacy, you may lodge a complaint with us. We will investigate and respond within 30 days.

9.3 Withdraw Consent

You may withdraw your consent for us to use or disclose your information at any time, subject to legal and contractual restrictions.

  1. Access and Correction Requests

To request access to or correction of your personal information, contact our Privacy Officer:

Privacy Officer
Australian Amyloidosis Network Ltd
Email: admin@aan.org.au

We may charge a reasonable fee for processing access requests. If we refuse access we will give you written reasons for refusing.

  1. Privacy Complaints
    1. Contact our Privacy Officer using the details above
    2. Provide details of your complaint in writing
    3. We will acknowledge your complaint within 7 days
    4. We will investigate and provide a written response within 30 days.

If you are not satisfied with our response, you may contact the Office of the Australian Information Commissioner:

Office of the Australian Information Commissioner
Phone: 1300 363 992
Email: enquiries@oaic.gov.au
Website: www.oaic.gov.au

  1. Changes to This Policy

We may update this Privacy Policy from time to time. The current version will be available on our website with the effective date clearly displayed. Significant changes will be communicated to service users where practical.

  1. Contact Us

If you have questions about this Privacy Policy or how we handle your personal information:

Australian Amyloidosis Network Ltd
Email: admin@aan.org.au
Website: www.aan.org.au

Effective Date: 19 February 2026