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Leading the Way


Without a coordinated approach to rare disease in Australia, there is great disparity in access to care, treatment and research. Despite this, there are many examples of effective responses to rare disease. We want to shine a light on these and call on these to be further developed and accessible for all Australians. If you/ your organisation is leading the way in responding to rare disease – we would love to showcase your work. Contact info@rarevoices.com.au

Recently WA set up Australia’s first Undiagnosed Diseases Program, with a number of other states also going down this path.  Early diagnosis is crucial for rare disease patients to ensure best care, best treatment and best support. Despite this, lengthy delays in diagnosis and misdiagnosis is common in rare disease. Timely diagnosis is important not just to reduce the psychological burden on the patient and their families, but also the burden on our health systems, due to hospital admissions, tests, procedures that could be reduced with an early accurate diagnosis. Imagine if UDPs were just one part of a broader national framework for rare disease!

WA is also the only Government which has implemented a Rare Diseases Strategic Framework. Imagine if all Australian Governments, state and territory worked together to systematically address the needs of all Australians living with a rare disease!

Recently there has been much a strong push and policy developed for a national newborn screening framework. Similarly, there has been increasing dialogue about the benefits of and needs for a National Rare Disease Registry.  

These are just a few examples. There are many opportunities to improve systems for rare disease. The Australian government needs to show leadership, provide the necessary systems and resources and make rare disease a public health priority.