Share Your Story

Share Your StoryPaul Jackson2026-07-04T15:30:50+10:00

If you would like to submit your personal story, please click on the button below and complete the form. 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 [email protected], and Rare Voices Australia (RVA) will contact you directly regarding further consent/authority requirements.

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Updated: 4 July, 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.

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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.