STORIES

A big thank you to everyone sharing their story or that of others living with a Rare Disease.

Sharing helps bridge divides and creates a community to assist those affected by rare diseases to feel less isolated.

Support the Rare Disease Australia Campaign and share your story

Join the community and share your story – A rare chance to make a difference. Get involved!

March: global MSA Awareness Month

March: global MSA Awareness Month

MSA is a rare disease that comes later in life, generally late 50s or later, and which has no tell-tale signs before you learn you have it. In 2007, Michelle was a Level 9 skier racing down double-black bump runs in Aspen. In 2010, she was successful and in full-time employment, being well ahead of budget during GFC…

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Thomas and Bradley

Thomas and Bradley

Bradley and Thomas Farrell were born with Arts Syndrome - a rare genetic condition causing muscle weakness, hearing and visual impairment, severe mental disability, as well as an increased risk of infection. This disease affects males only; the life expectancy is very short. Most children suffering Arts Syndrome die before reaching 10 years of age.

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Toby's Story

Toby’s Story

Toby Kable is a fourth year Primary Education student, majoring in Special Education at the University of Newcastle (New South Wales) and worked for many years with adults and children with special needs, including those affected by rare diseases.

Toby has been a songwriter and playing guitar for many years.

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Renee's Story

Renee’s Story

Hi, I’m Renee. I’m 19.

I love good food, the latest music, shopping and going clubbing with friends.

People should take the trouble to find out what rare disease day is all about because people with rare diseases go through a lot, and they deserve to be treated like everyone else.

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