National Plan Engagement Roadshows

RVA News

Rare Voices Australia is advocating as its number one priority for Australia to adopt a National Rare Diseases Plan. Over the past two years extensive research and information has been gathered through national coordinating committees, international meetings, engagement with those from across the rare disease sector and detailed reviews of literature. This information was used to develop the Scoping paper on the need for a National Rare Diseases Plan as requested by the Australian Health Ministers Advisory Council (AHMAC) in 2011.

In 2014 Rare Voices Australia undertook a national Roadshow to progress a national plan for rare diseases. The Roadshow involved round table discussions with patient, healthcare, research, government and industry stakeholders, with sessions in Queensland, Victoria, South Australia, New South Wales and Western Australia. The discussions focussed on the need, barriers and drivers for coordinated action on rare diseases and for a National Plan.

The key findings from the Roadshow, which will be presented at the Rare Disease Summit, have determined the Summit focus and themes.
Four focus areas of the Rare Disease Summit include:

•      Current Initiatives to progress a National Plan for Rare Diseases
•      Data Collection and Use
•      Models of Health Care
•      Diagnostics, therapeutics, & Clinical Trials

Over two days, attendees of the Summit will listen to and engage with experts in these four focus areas of Rare Diseases.  Interested delegates will include Clinicians, Researchers, Industry Executives, Health System Planners, Health Policy makers, and Leaders of Patient Organisations.

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