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.
If you are willing to share your personal story of living with rare disease please consider the following guidelines;
It is important to remember long stories with lots of detail are hard to read. Some things to include in your story may be areas such as;
- The time taken to receive a diagnosis of the rare disease
- The 3 most important areas of need that affect your day to day life living with a rare disease
- The services, care, support you need to assist you / your family further
- Please refrain from naming Doctors by name or particular hospitals.
Your form has been recieved.