If you would like to submit your personal story, please complete the form below. We will contact you if we require any additional information.
If you intend to share a personal story about someone other than yourself, please contact communications@rarevoices.org.au, and Rare Voices Australia (RVA) will contact you directly regarding further consent/authority requirements.
Read the personal stories RVA has published to date.
Sign up now for our monthly newsletter
Updated: 8 May, 2026
DISCLAIMER: The information on this website 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. See our Terms of Use for more information.
Rare Voices Australia acknowledges Aboriginal and Torres Strait Islander people as the Traditional Owners of Country throughout Australia and as a priority population of the rare disease sector. We pay our respects to Elders–past, present and emerging.
© 2026 Copyright Rare Voices Australia Ltd.
Privacy Statement | Accessibility Statement
