Privacy Policy


Retina Australia, in the course of its work, collects, holds and administers a range of personal information which may directly or indirectly identify a person.

The Board recognises the importance of, and is committed to, protecting the privacy of any personal information which is collected, held or administered by the organisation.

Retina Australia is bound by legislation including privacy laws, which impose specific obligations when it comes to handling information. The Board has adopted the respective Privacy Principles as minimum standards.


The purpose of this document is to provide a framework for Retina Australia in dealing with privacy considerations.


There are circumstances when Retina Australia needs to collect personal information from individuals. This includes but is not limited to:

  • Identifying information collected from members or persons seeking membership,
  • Identifying information contained within a database of Friends of Retina Australia group members,
  • Personal details of Directors,
  • Personal details of staff or applicants for employment,
  • Collection of a range of information and data for the purposes of providing support for the individual providing the information,
  • Collection of a range of information and data for the purposes of raising funds for research that will enable the prevention, treatment and cure of inherited retinal diseases.

Information will only be collected if it is necessary for the primary function and purposes of Retina Australia.

Retina Australia recognises the essential right of individuals to have their information administered in ways which they would reasonably expect – protected on one hand, and made accessible to them on the other.  These privacy values are reflected in and supported by our core values and philosophies.

Retina Australia is bound by laws which impose specific obligations when it comes to handling information. The organisation has adopted the following principles contained as minimum standards in relation to handling personal information.

Retina Australia will

  • Collect only information which the organisation requires for its primary function;
  • Ensure that stakeholders are informed as to why we collect the information and how we administer the information gathered;
  • Use and disclose personal information only for our primary functions or a directly related purpose, or for another purpose with the person’s consent;
  • Store personal information securely, protecting it from unauthorised access; and
  • Provide stakeholders with access to their own information, and the right to seek its correction if it is inaccurate, incomplete, misleading or not up-to-date.

Privacy Procedures


The Retina Australia Board is responsible for developing, adopting and reviewing this policy.

The Retina Australia company secretary is responsible for the implementation of this policy, for monitoring changes in Privacy legislation, and for advising on the need to review or revise this policy as and when the need arises.



Retina Australia will:

  • Only collect information that is necessary for the performance and primary function of Retina Australia
  • Notify stakeholders about why we collect the information and how it is administered.
  • Notify stakeholders that this information is accessible to them.
  • Notify stakeholders that this policy is freely available.

Use and Disclosure

Retina Australia will:

  • Only use or disclose information for the primary purpose for which it was collected or a directly related secondary purpose, unless an exception under state or federal law applies. For example, personal information can be disclosed to protect an individual from serious or imminent harm.
  • Only disclose personal information to third parties once it has been de-identified (i.e. names have been removed) and for the purposes outlined above. Alternatively it can be disclosed if expressed permission is given. This must be done in writing.
  • For other uses, Retina Australia will obtain consent from the affected person.

Data Quality

Retina Australia will:

  • Take reasonable steps to ensure the information the organisation collects is accurate, complete, up to date, and relevant to the functions we perform.

 Data Security and Retention

Retina Australia will:

  • Safeguard the information we collect and store securely against misuse, loss, unauthorised access, modification and disclosure.
  • Inactive records will be archived and stored securely for a period of seven years.


Retina Australia will:

  • Ensure stakeholders are aware of Retina Australia’s Privacy Policy and its purposes.
  • Make information about this policy freely available in relevant publications and on the organisation’s website.

Access and Correction

Retina Australia will:

  • Ensure individuals have a right to seek access to information held about them and to correct it if it is inaccurate, incomplete, misleading or not up to date.


Retina Australia will:

  • Give stakeholders the option of not identifying themselves when completing evaluation forms or opinion surveys.

Making information available to other organisations

Retina Australia can:

  • Only release personal information about a person with that person’s express permission. For personal information to be released, the person concerned must sign a release form.
  • Can release information to third parties where it is requested by the person concerned.

Accuracy of Information

Retina Australia will take reasonable steps to ensure that the personal information that is collected used and/or disclosed is accurate, complete and up to date.


Complaints about breaches of privacy can be made directly to Retina Australia.

Complaints about breaches of privacy can also be made to:

Office of the Australian Information Commissioner

Level 3, 175 Pitt Street

Sydney  NSW  2000

GPO Box 5218

Sydney  NSW  2001

Ph: 1300 363 992