Dialog Box


Living with a rare disease

The Australian experience of living with a rare disease

You can download a collection of personal stories prepared by Rare Voices Australia. Click on the image below to download the booklet in PDF format.



If you would like to purchase a copy of this booklet in glossy print, please email: accounts@rarevoices.com.au or phone: 0497 003 104.  The cost is $15.00 AUD per booklet (includes postage and handling within Australia).  All proceeds go to supporting rare disease projects.


Tell your personal story

On these pages, you can find out more about what it is like to live with, or care for someone with a rare disease. The stories featured are real experiences and will give you an insight into some of the issues these patients face on a daily basis.

RVA needs your help to build this page!  If you would like to share your personal story please contact communications@rarevoices.com.au