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
The 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
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.
