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: firstname.lastname@example.org
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.
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: email@example.com
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: firstname.lastname@example.org
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.