More than a million Australians are falling through cracks in the health system, says cricket hero Steve Waugh, who has set up a foundation to highlight the plight of people with rare diseases.
There are more than 6500 rare diseases, which affect around 1.2 million Australians, including 400,000 children.
"We want Australia to understand rare diseases are very common and don't just affect other people," says Waugh.
Rare diseases include certain cancers, cystic fibrosis, muscular dystrophies and Huntington disease.
"It's likely each and every Australian is connected to someone who has a rare disease," says Waugh, who is particularly inspired by the courage of affected children.
He is marking rare disease day on Friday by taking dozens of people on an outing to Sydney's Luna Park.
"In Australia, there is a particular lack of awareness of the impact of rare diseases. They do not represent a public health priority," he says.
Part of the problem for families is that it is difficult to put a name to many of the diseases, says Professor John Christodoulou from the Children's Hospital, Westmead.
This delays treatment and makes it difficult to access funding for specialised and expensive equipment.
"The more awareness there is in Australia, the better the quality of life of these families will be," he says.
"Treatment and government support for rare diseases is often minimal and ad-hoc," says Megan Fookes of Rare Voices Australia.
"There is no rare disease policy and there is no national plan.
"Lives are at stake. We need smarter policies from government to help people suffering from rare diseases to get access to co-ordinated care and treatments.
"People living with rare diseases deserve the same level of care as other patients, but they dont get it."
