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Share your Story

Submit your personal story of living with a rare disease in Australia. Sharing your personal story has benefits  not only to the person telling the story but also for  those who share a similar experience and the audience reading the story.

Please fill out the below form to share your personal story.


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Your form has been recieved.

Please ensure your photo is high resolution (it is clear and not pixelated)

Please share your personal story of living with a rare disease below. Some things you may like to include are:

  • Your diagnosis story
  • How your rare disease impacts your daily life
  • What services/care/support would help to increase your quality of life

When sharing your story, please refrain from naming doctors or particular hospitals.

By submitting your story, you certify that this is an original work and you give Rare Voices Australia consent to use the work contained in the file, with or without attribution. This use includes, but is not limited to, posting the work on the Rare Voices Australia website; sharing it through Rare Voices Australia and with various media-related publications. Please note that stories may be edited. Should you wish for your personal story and/or associated image to be removed at any time, please register your request via this email address: communications@rarevoices.com.au

Please Note: In accordance with RVA's Privacy Policy and Confidentiality Policy, your published personal story will only include your first name, rare disease and the State/Territory of residence. RVA will not include your email address or personal contact details.