Rare diseases list Australia

KiaanaKiaana Brown with her mum Alicia Source: The Advertiser

Charlotte Elliott with her dad Mark. Source: The Advertiser

THE almost 1.5 million Australians who live with a rare disease want a better deal after years falling through the cracks in a health system focused on more common illnesses.

They are the invisible ones. When it comes to funding, research, and even correct and timely diagnoses, close to 1.5 million Australians don’t exist – suffering from diseases and conditions so rare they are falling between the cracks of a health system that fails to serve or recognise them.

Rare diseases affect an astounding number of Australians: almost one and a half times the number of people with diabetes.

A “rare disease” is defined as any disorder or condition that is life-threatening or chronically debilitating with an estimated prevalence of 5 in 10, 000 – or of similarly low prevalence and high level of complexity that special combined efforts are needed to address the disorder or condition.

With little high-profile publicity or attention – there is no ribbon to wear, no pavement to pound – those living with rare diseases have been largely forgotten.

There are more than 7000 rare diseases and many have no formal title and are difficult to diagnose. People living with rare diseases can go years searching for an explanation for their symptoms. They begin to feel like hypochondriacs, that it is all in their head.

Rare Voices Australia was formed in early 2012 as Australia’s National Rare Disease Alliance to promote health policy and a healthcare system that works for those with rare diseases. It is pushing for a National Rare Disease Plan, to provide clear national guidance on rare disease management and research, a co-ordinated response that can be delivered within existing resources, while helping promote research and diagnosis, treatment and care.

Charlotte ElliottThe plan has been accepted by health departments in WA and the Northern Territory.

Rare Voices Australia executive director Megan Fookes says the current situation not only costs those with a rare disease in terms of quality of life, it is also economically unsustainable. Patients with rare diseases account for a disproportionately high cost to the healthcare system in comparison to other patients.

“Most have a horrific diagnostic odyssey and the economic cost is astronomical, ’’ Mrs Fookes says. “If you don’t exist in a health system then you don’t have your needs met. These people use a lot of health services, some have eight to 10 specialists. Some can’t work because they are caring for family members with a rare disease. The economic burden is unreal, especially when added to the stress of caring for someone who is sick.”

MED-21. Spontaneous intramural small bowel hemorrhage: a rare complication of anti-coagulation.(Section on Internal Medicine): An article from: Southern Medical Journal
Book (Southern Medical Association)

Popular Q&A

Can settle in canada at sympathy basses as i m suffering from a rare disease and have no medication facility?

In order to immigrate to Canada you must meet the requirements of one of the categories. Further, all immigrants are required to undergo medical exams. Any serious medical condition is likely to make you medically inadmissible to Canada.
There are hundreds of millions of sick people in the world who can't get medical treatment in their home countries. Nearly half the population of the planet doesn't have access to western medical treatment.

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