First national action plan for rare diseases

The Morrison Government will provide up to $3.3 million for activities to implement the first National Strategic Action Plan for Rare Diseases, which was launched yesterday ahead of Rare Disease Day (February 29, 2020) .

The Action Plan will increase awareness and promote earlier, more accurate diagnosis and treatment for around two million Australians suffering from rare diseases.

Rare diseases are having a major impact on individuals and families across Australia. They cause great uncertainty, frustration and fear, raising a myriad of questions, with few answers.

While each rare disease affects less than five in every 10,000 people, there are more than 7,000 currently known rare diseases.

Approximately 80 per cent of rare diseases are of genetic origin. Others include rare cancers, infections and autoimmune disorders.

The Action Plan is comprised of three pillars:

• Awareness and education.
• Care and support.
• Research and data.

Each pillar has key priorities for action, including prevention, early detection and screening, accurate and fast diagnosis, and access to the right treatment.

The Government provided $170,000 to Rare Voices Australia to develop the Action Plan, including consultation with stakeholders and people living with rare diseases, their families and carers.

The Government will provide up to $3.3 million for activities to implement the Action Plan, including activities to improve the medical profession’s knowledge and awareness of rare diseases.

Rare Voices Australia will receive up to $1 million over three years, from next financial year, to continue its work as the peak body for this issue.

We will also be calling for organisations to develop and deliver new education resources to health professionals, and to provide new support for people living with a rare disease, with a total funding of up to $2.3 million.

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