Privacy Policy

Rare Find Foundation will from time to time, collect personal information from you.

Rare Find Foundation is committed to ensuring that the collection, retention, use and disclosure of the Personal Information you provide (i.e. information which is collected and identifiable as relating to you personally) complies with all applicable legal requirements and that there is no act or practice that interferes with your privacy rights. All possible steps are taken to ensure that any Personal Information you provide online through is not disclosed to or accessed by unauthorised persons and is used only for the purpose for which you have provided it.

Summary of the Privacy Policy

  • Rare Find Foundation as a charity collects information about you in order to provide you the best and most appropriate services and support.
  • We only collect essential information, and we store your details securely.
  • Your details will not be passed on to any other person or organisation without your permission.
  • Government funding requires that we pass on statistics about some of the services that we provide to you. This information is transmitted in a way that does not identify you.
  • You are able to obtain some services from Rare Find Foundation anonymously if you wish.

Why we collect information

Rare Find Foundation needs to collect information about you in order to provide you the best and most appropriate services and support.

The records that we keep fall into the following categories:

  • Financial transactions, such as donations and merchandise purchases
  • Administrative records in order to send out newsletters and other material relevant to Rare Find Foundation, or which keep people informed of issues, events and courses relevant to managing Tay-Sachs and Sandhoff diseases.
  • Records of professional services, such as counselling, information, assessments, support group attendance and education.

Some of the information we obtain is provided to government agencies for statistical and accountability purposes. In these instances, your personal details are used in a way that does not identify you.

How we keep your records safe

Your records are handled with care. You can be assured that your privacy will be protected at all times, in accordance with privacy legislation.

Only those staff and volunteers who are involved in the relevant areas have access to your details. Personal and financial records are securely stored when they are not being actively used.

Access to your records

We will only pass on your information to other people or organisations with your permission. For example, this might be when you need to be referred to another organisation for services that will assist you in ways in which Rare Find Foundation cannot.

You can view your own personal records. If you would like to see your records, please advise us in writing and a senior staff member will provide you with access at a mutually convenient time.

What is discussed in interviews and counselling sessions is kept confidential. Any information that is recorded is to allow continuity between one session and your next contact with us.

Who can provide information

Generally, you will provide information about yourself. In the case of a person who cannot consent to the collection, use and disclosure of their personal information, a third party who is ‘responsible’ for the person, such as their carer, may be requested to do so.

How to contact us

Privacy Officer
Rare Find Foundation Limited
Level 4, 50 Pirie Street
Adelaide 5000
South Australia

Feedback and complaints

We welcome your feedback and questions about how we store and manage your records; so please contact us if there is any matter that you would like to discuss.

In the event that you have a complaint about the way in which we deal with privacy issues, please contact us and we will do our best to resolve it. If we cannot resolve the issue, you have the right to make a complaint to the Office of the Australian Information Commissioner 1300 363 992.


This Privacy Statement may be amended from time to time by us at our sole discretion and variations will become effective at the time of posting. Rare Find Foundation is not responsible for any unauthorised use of or access to the Personal Information provided.

Links to third party websites

This website may contain links to third party websites for your convenience and information. When you access one of these third party linked sites, Rare Find Foundation Limited is NOT responsible for the privacy practices of that website. Please review the privacy policy for each site you visit.