Privacy Policy

This Privacy Policy sets out how Rare Voices Australia (RVA) uses and protects any information you give us when you use this website. RVA is committed to the protection of privacy. The collection of information is intended for the organisation only and for the purpose of sustaining partnerships and up-to-date contact information.

RVA sets out terms of privacy on this page which may be amended from time to time. You should check this page regularly to ensure you are aware of any changes.

Information we may require:

  • Name and title
  • Contact information including address, telephone (mobile), email address
  • Membership details
  • Demographic information such as age 
  • Other information relevant to surveys and/or feedback

Use of information

The information we gather may be used for the following purposes only:

  • To update our database
  • Partnership renewals
  • To connect individuals with others living with the same rare disease (with your consent)
  • Assessing needs and better targeting our services 
  • Communications by way of periodic emails, e-newsletters and special events

RVA may publish images of supporters, RVA staff and attendees at events in publications, on social media, or elsewhere, after obtaining informed consent where practicable. If an individual has any concerns about how their personal information is being used, please notify RVA immediately:

Disclosure of information

RVA won’t pass information on to third parties except in the following circumstances:

  • Information is given to financial institutions/intermediaries for normal bank processing in which case there is a contractual expectation of confidentiality
  • Information is given to communication service providers for bulk processing in which case there is a contractual expectation of confidentiality
  • A government authority or Australian law or court order requires or authorises disclosure of information
  • An individual has consented to RVA disclosing their personal information to a third party
  • Other parties including agents and contractors have agreed to keep information secure and confidential in line with the Australian Privacy Principles (APPs)

When disclosing personal information to a third party, RVA will take reasonable steps to ensure that the third party does not breach the APPs.

Direct marketing

RVA may send supporters updates and information in line with its mission and vision. Recipients are given the option to unsubscribe from communications and can contact RVA directly if they do not wish to receive this communication:

How RVA stores personal information

RVA ensures reasonable steps are taken to protect personal information from misuse, loss and unauthorised access, modification or disclosure. Personally identifiable information is kept secure and only authorised employees have access to this information.

If you would like to update your personal information stored by RVA, please contact us:

Any information no longer required by RVA will be destroyed or de-identified, unless RVA is required by law or under an Australia law or a court order to retain this information.


RVA is committed to ensuring that your information is secure. All forms are provided in a secure format and your information is accessible only to RVA.

Links to other websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.


RVA uses cookies to track visits to our site, social media profiles and your interaction with our other digital services (e.g. email). Cookies are used for marketing purposes to provide you with a better user experience while browsing through the RVA website. A cookie is a text file with small pieces of data that are used to identify your computer as you browse websites.