Australian academics first called for a national plan for rare diseases in 2010, so it is with great excitement that the National Strategic Action Plan for Rare Diseases (the Action Plan) was launched in 2020.
Rare Voices Australia (RVA) has led the collaborative development of the Action Plan. After extensive consultation with stakeholders around the country, the Action Plan has been developed by the rare disease sector, for the rare disease sector!
Companion Documents
Engaging with the rare disease community (PDF)
A stocktake of rare disease activities in Australia (PDF)
The evidence base for the National Strategic Action Plan for Rare Diseases (PDF)
Summary Communication Materials
National Strategic Action Plan for Rare Diseases Plan on a Page (PDF)
Pillar 1: Awareness and Education Summary (PDF)
Pillar 2: Care and Support Summary (PDF)
Pillar 3: Research and Data Summary (PDF)
For all media requests or enquiries about the Action Plan, please email: communications@rarevoices.com.au
A Timeline
2010
Australian academics first call for the development of a national rare disease framework.
2011
‘Awakening Australia to Rare Diseases’ international symposium with over 200 delegates in Fremantle, Western Australia (WA).
2012
RVA is founded in response to the international symposium. Developing a national rare disease framework is its primary strategic objective. RVA begins organising Parliamentary Events annually to enable politicians to gain a better understanding and awareness about rare diseases.
2014
RVA undertakes a roadshow to progress a national plan for rare diseases. Roundtable discussions are held with key stakeholders in Queensland, Victoria, South Australia, New South Wales and WA.
2015
Key findings on the principles and objectives to progress a national plan are presented at the inaugural National Rare Disease Summit. The collaborative outcome of the Summit is a Communiqué to progress a National Rare Disease Plan.
2017
The themes of the Communiqué are further developed into the key advocacy and policy document, Call for a National Rare Disease Framework: 6 Strategic Priorities.
2018
The Australian Government Department of Health engages RVA to lead the collaborative development of the Action Plan.
A Steering Committee consisting of cross-sector representation is established and guides the development of the Action Plan.
2018 – 2019
A national stakeholder consultation process is undertaken, which involves all stakeholders in the rare disease sector. This ensures the Action Plan is collaborative, representative and holistic.
2020
The Australian Government launches the first nationally coordinated policy approach to address rare diseases in Australia. Implementation efforts begin.
Partner with RVA
RVA partners with key stakeholders in a variety of ways. Whether you are leading a rare disease support organisation that is looking to become an RVA Partner, or are a researcher looking to partner with RVA on your latest project, we’re open to hearing from you.
