Terms of Use – Rare Awareness Rare Education (RARE) Portal

Terms of Use

[Updated 25 July 2022]

These Terms of Use are legally binding. By accessing, using or viewing information on the Rare Awareness Rare Education (RARE) Portal, you agree to these Terms of Use which, together with our (Rare Voices Australia) Privacy Statement, govern Rare Voices Australia’s (RVA) relationship with you in relation to the information provided on this website.

RVA may change the content on this website, these Terms of Use and/or our Privacy Statement at our discretion and without notice. We encourage you to check these documents regularly. By continuing to access information on the RARE Portal, you accept the Terms of Use and our Privacy Statement, which are subject to the laws of Victoria.

Important Information

Information housed on the RARE Portal is not intended for use in emergency situations. In the event of an emergency, call triple zero (000) and request an ambulance.

All information on the RARE Portal is for your general information and use only. Information is customised for people located in Australia and should not be used as medical advice regardless of your location. If you have, or suspect you have, a medical problem, please consult a qualified healthcare professional. Do not disregard any professional advice, or delay seeking professional advice, due to any information accessed via the RARE Portal or distributed by RVA.

All information provided on the RARE Portal, including treatment information, is for general use only and does not replace professional advice. The information is not intended to be used as medical advice, diagnosis or treatment and should not be relied upon to manage or diagnose a rare disease. Information on the RARE Portal about a service, treatment or therapy does not in any way endorse or support such service, treatment or therapy. Please seek support from qualified healthcare professionals to learn more about the most suitable care and support options for you. 

Disclaimer of Warranties and Representations

All information on the RARE Portal is subject to RVA’s quality assurance processes. However, RVA makes no representation or warranty (express or implied) regarding the currency, completeness, accuracy, reliability, suitability, fitness for purpose, non-infringement of third-party rights and/or availability of the information that appears on the RARE Portal.

The information on the RARE Portal is intended for educational purposes only and does not replace professional advice. Rare diseases typically display a high level of symptom complexity and variability. Individuals diagnosed with the same rare disease may be impacted differently and each person’s experience is unique. Please seek support from qualified healthcare professionals to learn more about the most suitable care and support options for you.  

Disclaimer of Liability

By using the RARE Portal, you acknowledge that your access and use of any information on the site is entirely at your own risk and that the information may contain inaccuracies. You also recognise the possibility of human error in preparing the information. Information on the RARE Portal has been customised for the Australian context and may have been written by third parties. As such, the information on the site has not necessarily been independently verified by RVA.

To the maximum extent permitted by law, RVA expressly disclaims all liability (including for negligence) for any loss, damage, injury, expense or costs incurred by you arising out of accessing, downloading, using or relying on the information contained on the RARE Portal, including any third parties accessed through a link on the site.

Intellectual Property Rights

All intellectual property rights on the RARE Portal, including (without limitation) copy, graphics, architecture and coding (including any copyright subsisting in them), is either owned by RVA or permission has been granted to RVA to use this intellectual property for the purposes of the RARE Portal.

You may access and download the information on the site where available to the extent permitted and in accordance with these Terms of Use. You cannot, unless otherwise permitted by law, modify, publish, transmit, distribute, participate in the transfer or sale, create derivative works, or in any way exploit, any of the information in whole or in part without the prior written permission of RVA or the original owner of the material. You must not use any information housed on the RARE Portal for commercial purposes, including selling a product or service. RVA retains the right to remove and update links to external websites as needed.

Information on the RARE Portal may contain trademarks owned by RVA and third parties. You may not display or use, in any manner, any trademarks featured without prior written permission of the trademark owner.

Links to Other Websites

The RARE Portal contains links to other websites. These links are provided for your convenience only.

Views or recommendations provided in linked websites do not necessarily reflect those of RVA and RVA has no responsibility for the material and content of the linked website(s). It is your responsibility to make your own informed decisions about the currency, completeness, accuracy, reliability and suitability of information contained in linked websites.