Introduction
1. Rare Voices Australia (RVA) is committed to protecting the privacy of personal information which the organisation collects and manages. This commitment is communicated in RVA’s Privacy Policy and this Privacy Statement.
2. The purpose of this Privacy Statement is to clarify how RVA manages personal information which is shared with RVA. By providing personal information to RVA or using any of RVA’s communications channels, an individual provides implied consent to RVA collecting, using and disclosing this information in accordance with this Privacy Statement and RVA’s Privacy Policy.
Personal information collected by RVA
3. RVA will collect information which it requires to perform its functions and activities. RVA may collect personal information which includes:
- Name and title.
- Contact details including address, phone number and email address.
- Images.
- Demographic/statistical information, such as age.
- Financial information required to process payments, or receipts from an individual/organisation.
- Information about donations made or bequested to RVA.
- Information about the organisation an individual works for including the company name and an individual’s job title.
- Sensitive information where this is permissible by the Australian Privacy Principles. (For example, sensitive information is collected upon consent by an individual, or if required by Australian law.)
- Other relevant information for RVA’s work. This may include information submitted in surveys, online forms, or feedback on events.
4. RVA may collect information electronically or in-person. This may occur when an individual communicates with RVA via any of its public facing channels (e.g., RVA’s website, social media channels), when an individual applies for an RVA position, and when an individual is engaged by RVA. RVA endeavours to only collect personal information required to provide customised and relevant services to the individual.
5. Where practical, RVA will collect personal information directly. If RVA receives information from another party, RVA will take reasonable steps to ensure the individual is aware that RVA has collected this information and the circumstances of the collection.
6. When RVA is not required to identify an individual and where practical, RVA will provide an option to communicate anonymously.
7. Accessing RVA’s website/portals/social media channels: RVA may use tools to analyse and track visits to RVA’s website. This information may include browser type, time spent on the website and viewed pages. This information is used in an aggregated manner to analyse how RVA’s website is used for RVA to improve its services.
8. Cookies: when an individual visits the RVA website, personal information and user data may be collected automatically through cookies, including but not limited to: IP address and/or domain name; operating system; and the date, time, and length of the visit to the website. This information is used for the compilation of statistical information about the use of RVA’s website and to improve the experience of people using the website. If an individual does not wish to allow any cookies, the browser should be set to refuse cookies. However, this may mean the full functionality of RVA’s website will not be available.Â
9. Third party sites: RVA’s website has links to other websites not owned or controlled by RVA. RVA is not responsible for the content on these sites or the consequences of an individual visiting these sites. RVA’s Privacy Policy and Privacy Statement does not apply to external links.
Use and disclosure of personal information
10. RVA’s purposes for collecting, holding, using and disclosing personal information include the following:Â
- To provide an individual with appropriate and customised services, including to connect individuals with others (with the required express/implied consent).
- To solicit, accept and process donations.
- To respond to enquiries from an individual and to communicate information about RVA’s work. This includes periodic emails, e-newsletters and notification of events.
- To process and assess employment/volunteer or other applications to RVA positions, partner applications/renewals and event participant invitations.
- To undertake research, surveys and analyse statistical information.Â
11. Occasionally, RVA may use personal information to communicate promotional materials in accordance with applicable laws or with an individual’s required express/implied consent. If promotional information is received from RVA and does not want to be received in the future, an unsubscribe function will be made available, or the individual should contact RVA via the means detailed on RVA’s website.
12. RVA may publish images of attendees at RVA events in publications, on social media or elsewhere, after obtaining the required express/implied consent.
13. RVA will not provide information to third parties, except as follows:
- As authorised or required by law. (For example, a health directive which may require RVA to disclose additional personal information such as a phone number and email address to event organisers in the event of a health incident.)
- To universities or other research bodies for research purposes when this is summarised in broad aggregated data.
- To RVA’s business partners and service providers who assist RVA in the provision of the services RVA provides to an individual.
- To financial institutions/intermediaries for processing authorised financial transactions, where there is an explicit/implied obligation to respect confidentiality.
- To communication service providers for processing information on behalf of RVA, where there is an explicit/implied obligation to respect confidentiality.
- To the relevant hospital/health service providers for emergency contact purposes.
- An individual has provided the required express/implied consent to RVA disclosing personal information to a third party.
- Where the assets and operations of RVA’s business are transferred to another party.
14. RVA works in an international context where knowledge and resources may occasionally be shared globally to obtain the best outcomes from RVA’s work. It is possible (but unlikely) personal information is shared with RVA partners based outside Australia to perform RVA’s functions and activities. Should this occur, RVA will be guided by Australian Privacy Principle (APP) 8—cross border disclosure of personal information. This may include RVA sharing information internationally if it believes that the overseas recipient of the information is subject to a law or binding scheme that has the effect of protecting the information in a substantially similar way in which the APPs protect the information, or where the individual provides the required express/implied consent to the disclosure.
15. If RVA receives unsolicited personal information, if this could otherwise be lawfully collected, and is necessary for RVA’s activities, this will be used and disclosed as per the solicited personal information received from an individual.
Quality and security of personal information
16. RVA will provide appropriate security when personal information is entered on RVA websites. However, as RVA’s websites are part of the internet, there are inherent risks relating to internet security and RVA cannot guarantee that this information will not be intercepted while being transmitted over the internet.
17. RVA will take all reasonable steps to keep personal information accurate, up-to-date, and complete, and to protect personal information from misuse, interference, loss, or unauthorized access, modification, or disclosure.
18. Any information no longer required by RVA will be destroyed or de-identified, unless there is a need to keep information for legal, auditing, or other risk management reasons.
Accessing personal information
19. An individual may access, update, or request personal information to be deleted by contacting RVA via the means detailed on RVA’s website. RVA will respond to such requests as soon as practical. All reasonable steps to comply with a request will be made, unless there is a need to keep information for legal, auditing, or other risk management reasons.
Complaints about privacy
20. Any complaints about RVA’s privacy practices should be submitted in writing to info@rarevoices.org.au.
21. RVA takes any privacy complaint seriously and will deal fairly and promptly with any complaint. However, if a response from RVA is not satisfactory, the complaint can be directed to the Australian Information (Privacy) Commissioner (www.oaic.gov.au).
How to contact RVA
22. For questions about this Privacy Statement or RVA’s Privacy Policy, please contact RVA at info@rarevoices.org.au.
Nearly two million Australians are living with a rare disease – one and a half times the number of Australians with diabetes!
