Australia’s first National Rare Diseases Framework

The Liberal National Government is taking more action to support people battling rare conditions by developing Australia’s first National Rare Diseases Framework and Action Plan.

Funding of $170,000 will be provided to Rare Voices Australia through the Government’s Public Health and Chronic Disease Program to enable the collaborative development of the action plan and framework.

Specific priorities, actions and activities will be identified through extensive consultation including people with a rare disease, clinical and academic experts, policy makers and state and territory governments.

The framework and all recommendations for action will be supported by robust evidence so that people with rare diseases can receive timely diagnosis, treatment and the best care possible.

Our Government recognises the fact that these diseases are statistically rare – with an estimated prevalence of five in 10,000 – therefore special and concerted efforts are needed to address them.

There are more than 8,000 rare diseases which are life-threatening or chronically debilitating.

When someone is diagnosed with a rare disease they need our love and support but also the best possible treatment and care. This plan will benefit people with rare diseases, their families and the wider community.

The Government provides treatment for rare diseases through Medicare, through medicines subsidised through the Pharmaceutical Benefits Scheme (PBS) and the Life Saving Drugs Program.

Already, through the Life Saving Drugs Program, the Government funds fourteen different life-saving medicines for nine very rare diseases providing physical, emotional and financial relief for 400 Australian patients.

The Liberal National Government’s strong economic management means we can also support medical research that gives Australians with rare diseases access to the next generation of life saving technologies.

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