Support for rare

The Australian Government has announced support for a National Rare Disease Framework and Action Plan.

The Hon Greg Hunt, Minister of Health, opened the 2018 National Rare Disease Summit last week by announcing the Morrison Government’s commitment to patients with rare diseases. The Morrison Government will commission Rare Voices Australia (RVA) to work with all stakeholders to deliver the National Rare Disease Framework with $154,000 in grant funding.

“To ensure the most equitable, effective, efficient and coordinated approach to rare disease, Australia needs a National Rare Disease Framework consisting of six strategic priorities: diagnosis, access to treatments, data collection, coordinated care, access to services and coordinated research. RVA welcomes the Morrison Government’s commitment to ensuring Australia is a leader among the APEC Rare Disease Network, in addition to bringing the nation in-line with the EU, UK and other parts of the world,” said RVA’s Chief Executive Officer, Nicole Millis.

“The Morrison Government’s announcement today, supporting a National Rare Disease Framework, ensures the best possible outcomes for current Government investment in rare disease. It’s the only way to help guide the most effective rare disease policy now and in the future. Additionally, it helps to raise the profile of rare disease more permanently and most importantly, ensures no Australian is left behind.”

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