National Strategic Action Plan for Rare Diseases.
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National Strategic Action Plan for Rare Diseases

Delivered in February 2020, the National Strategic Action Plan is the first national and coordinated plan to help deliver better outcomes for more than the estimated 2 million Australians living with a rare disease.

As mentioned by Nicole Millis, CEO of Rare Voices Australia, ‘(the) Lack of awareness, the struggle for timely and accurate diagnosis, limited care and support options, a lack of research, poor data collection and use …’ these are just some of the many complexities that are unmet within the rare disease space in Australia.

About the Action Plan

The Australian Government commissioned this report to develop an Action Plan on behalf of the rare disease sector.

The Action Plan provides guidance and direction around the key goals and priorities for Australians living with a rare disease. It sets out actions and activities determined by the sector, which could be introduced to improve the health and well-being of Australians living with rare diseases.

The actions identified in the Action Plan are for consideration by a wide range of stakeholders, including governments at all levels, non-government organisations, the public and private health sectors, industry, researchers and academics, rare disease organisations and the wider community. The implementation of any of the actions outlined is a decision of each stakeholder, based upon their areas of responsibility, governance remit, existing activities and future planning and directions in relation to rare diseases.

Plan on a PageNational Strategic Action Plan - Plan on a Page

To simplify the Action Plan, you can view its three key pillars.

  • Pillar 1: Awareness and Education
  • Pillar 2: Care and Support
  • Pillar 3: Research and Data

These principles are the foundation of the Action Plan.

Download the National Strategic Action Plan for Rare Diseases here.






View the final report below.