Please share your personal story of living with a rare disease below.

You may like to include: your diagnosis story; how your rare disease impacts your daily life; and what services/care/support would help to increase your quality of life.

When sharing your story, please refrain from mentioning doctor/specialist's names or hospitals. We will not publish anything that is overly critical or contradicts credible medical information. RVA also seeks and follows advice on medical matters from our Scientific and Medical Advisory Committee.

By submitting your story, you certify that it is an original work and you (as well as those referred to in the story and featured in any images supplied) give Rare Voices Australia consent to use the work and images contained in the file. This includes posting your story on the Rare Voices Australia website, our social media channels and in our monthly newsletter. RVA will contact you directly if we wish to use your story for any other purpose. Please note that all stories are proofread and may be edited in-line with RVA’s Style Guide - if any further changes are made to what was originally submitted, RVA will be in touch prior to publishing your story. You can choose to withdraw your story at any time. If your story has already been published online and you’d like your story and associated image to be removed, please reach out directly via email: communications@rarevoices.org.au

Please do not submit any sensitive information via this form.

RVA cares about the privacy of your personal information. Please refer to RVA’s Privacy Statement for more information.