Huntington's SA & NT needs to collect and use information in order to provide the best and most appropriate supports and services to those people dealing with Huntington’s Disease.

We only collect the information that we need in order to fulfill our primary function.

The records that we keep fall into the following categories:

Financial transactions, such as donations and membership records;  Administrative records in order to send out newsletters and other material to Huntington's  SA & NT members or keep people informed of issues, events and courses relevant to managing Huntington's disease;
Statistics and records of professional services, such as counseling, assessments, support group attendance and education.

We take the responsibility of maintaining privacy very seriously. We will protect the information that we collect, use, hold and administer; storing personal information securely and protecting it from unauthorised access.

We will use and disclose personal information only for our primary functions or a directly related purpose.

Any other use of a person’s information will require that person’s consent.  For example, this might be when someone needs to be referred to another organisation for services that Huntington's SA & NT cannot provide.

Some of the information we obtain is provided to government agencies for statistical reporting and accountability purposes, but this information is be transmitted in a way that does not identify individuals.

Only staff and volunteers who need to know personal information to fulfill their roles will have access to that information.

You are able to obtain most services from Huntington's SA & NT anonymously if you wish.

Where individuals are not able to consent to providing required information, a third party who is ‘responsible’ for the person, such as their carer, will be able to provide the information.

Individuals can view their own personal records, by requesting this in writing. Access will then be provided at a mutually convenient time. Any necessary corrections will be made to the records.

We welcome feedback and questions about how we store and manage personal information, 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.