Privacy Policy for the Australian Cystinosis Foundation Ltd (ACF)

For the purposes of this Policy, ACF/us/we shall mean the Australian Cystinosis Foundation Ltd ABN 11 648 400 355.

Protecting personal information has always been important to us and the Privacy Amendment (Enhancing Privacy Protection) Act 2012 (Cth) and the Privacy Act 1988 (Cth) (‘the Act’) means that we have legal obligations in relation to protecting personal information. The Act, in accordance with Australian Privacy Principles, determines how we must handle personal information.

This is our policy on the management, collection, security, integrity, disclosure of and access to personal information about our clients; entities that include but are not limited to individuals, companies, trusts, trustees and their assigns (‘you’) whose personal information we manage, collect, secure, disclose and correct in accordance with our reasonable business purposes.

Personal Information Examples

Contact details, date of birth, occupation, driver's licence, medical history, medical requirements, medical research participation, employment history, salary information, Tax File Number, qualifications, ethnic or racial origin, religious beliefs, political association, professional memberships, criminal record, health and genetic information, and other identifying information, financial information, bank account details, type of credit, the terms and conditions of the credit that relate to the repayment of the amount of credit, , repayment history information (RHI), transaction history information, default information, serious credit infringement information, court proceeding, publicly available personal information.

Purpose of collection and disclosure of personal information and how we protect and manage that personal information

If we collect this type of information it is generally collected from your personal information medical forms submitted by you to us, an application for employment and from third parties such as hospitals, medical research facilities and other Cystinosis or rare genetic disorder support groups, credit providers and insurers etc. Examples of third party providers of your personal information.


 • Medical Research Facilities
 • The Courts
 • Australia Post
 • Communications providers
 • MyGov
 • Banks and deposit taking institutions
 • ASIC
 • Utility Providers
 • Real Estate Agents
 • Share registries

We may also collect your publicly available information relating to credit worthiness and if applicable registration of security interests under the Personal Properties Securities Act 2009 (Cth).

 • Court judgments/writs
 • Bankruptcy and personal insolvency information
 • Directorship and Proprietorship Information

We may also be required to use and disclose your personal information in accordance with the law (for example by direction of a court/tribunal). We may disclose your personal information to medical research facilities, hospitals, our professional advisors, and we may use your personal information for insurance purposes, or in relation to claims, audit processing and litigation and/or to assess your suitability for employment or credit related applications or medical research programs connected with ACF.

Credit card payment authorisation

We may sometimes require you to complete and sign our credit card payment authorisation form for the purposes of transacting with us. Upon your request, this information will be destroyed if it is no longer required for the purposes of our business functions, activities or legal requirements.

Unsolicited or sensitive information

We may sometimes collect sensitive information. Sensitive information is only collected if the information is reasonably necessary for the purpose of performing our functions and activities. We will destroy unsolicited information, whether sensitive or otherwise, unless it is necessary for the reasonable purposes of our business.

Anonymity or pseudonymity

We will preserve the anonymity or pseudonymity of an entity where practicable, in the circumstances and in accordance with the law.

Quality of personal information

We will take all reasonable steps to maintain accurate and complete personal information. You may access your personal information and request that your personal information is corrected.

Direct and Promotional Marketing

We will not use and/or disclose personal information for any direct or promotional marketing purposes without your prior consent. If you subscribe to our Newsletter you consent to your nominated subscription details being obtained, retained and used by us for direct or promotional marketing purposes until you advise us otherwise by notice in writing.

Government related identifiers

We may send your personal information offshore for administrative purposes. If we do, we would do so in compliance with our statutory obligations.

Security of Information

Administration security

ACF has processes, documentation and systems in place to protect your personal information from unauthorised access, use, disclosure or alteration. Only authorised team members performing designated tasks are permitted to see or use personal information held by ACF. We use a combination of physical and electronic security measures to protect personal information, including restricting physical access to our offices, firewalls and secure databases to keep personal information secure. We have appointed specialist service providers for our business such as lawyers. These service providers are authorised to use personal information maintained by our business to the extent that is necessary for them to provide the contracted services. Our service providers are required to treat that information in the strictest confidence in accordance with confidentiality provisions in our agreements with the service providers and otherwise in accordance with the law.

Website Access and Use

Cookies may be used by us to collect information including IP addresses about people from our website. There are many aspects of the site which can be viewed without providing personal information, however, for access to ACF user support features you are required to submit personally identifiable information. Cookies allow us determine who has seen particular pages on our website and how frequently. This can help us to identify your preferences and allow us to recommend content we believe you’d be most interested in or would be most relevant to you.

For each visitor to reach the site, we expressly collect the following non-personally identifiable
information, including but not limited to browser type, version and language, operating system, pages
viewed while browsing the Site, page access times and referring website address. This collected
information is used solely internally for the purpose of gauging visitor traffic, trends and delivering
personalised content to you while you are at this Site.

From time to time, we may use customer information for new, unanticipated uses not previously
disclosed in our privacy notice. If our information practices change at some time in the future we will
use data collected from the time of the policy change for these new purposes only.

Access to and correction of your personal information

You can request access to and correction of your personal information that we hold by contacting us
by way of the following methods:

Phone: 07 5452 7300

Mail: Dispute Resolution Team Att: The Australian Cystinosis Foundation

PO Box 1899 Sunshine Plaza QLD 4558

We will endeavour to provide you with the copies of the personal information you require or to correct
your personal information within a reasonable time following receipt by us of your request.

If a fee will apply to supply of the information, or we are permitted by law to withhold certain
information, or we are unable to correct your personal information, we will advise you as soon as
reasonably possible following receipt of your request for that information or correction.

Destruction of Information

We will destroy personal information upon your request. You can contact us 07 5452 7300 or by accessing our website The exception to this is if the personal information is required in order to fulfil the reasonable purposes of our business or the information is required to be maintained and/or stored in accordance with the law.

Complaint procedure

If you have concerns about how we manage your personal information you may contact our internal
dispute resolution (‘IDR’) team using any of the below methods:

Phone: 07 5452 7300

Mail: Dispute Resolution Team Att: The Australian Cystinosis Foundation

PO Box 1899 Sunshine Plaza QLD 4558

We will provide you with an acknowledgement upon receipt of your complaint and seek to resolve it
within 45 days.

In the event you are not satisfied with the resolution provided you may escalate your complaint to the
Office of the Australian Information Commissioner:

Phone: 1300 363 992

Fax: (02) 9284 9666


Mail: GPO Box 5218, Sydney NSW 2001

For further information about privacy obligations please visit the Office of the Australian Information
Commissioner website at

Changes to Privacy Policy

This policy is subject to change. We will endeavour to promptly update our website at with any amended Privacy Policy. You can contact the Privacy Officer to obtain a current copy of this Privacy Policy.