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Why We Need A National Plan


Rare disease needs to be recognised as a national health priority. The burden of rare disease, although largely hidden, is unacceptably high for patients, families, community and the health system. 

People living with rare disease need equitable and early access to: 

  • Diagnostics
  • Treatments
  • Services
  • Coordinated Care
  • Coordinated Research
  • Data Collection 

It is in the national and state interest to show leadership and action towards more effective national systems and approaches to rare disease. People with rare disease deserve the best coordinated and consistent care no matter where they live in Australia. It is only fair. 

To effectively prioritise Rare Disease, Australia must adopt a Rare Disease Plan or Framework. The Plan needs endorsement from all stakeholders, including the Australian, state and territory governments. Without this we are falling behind the UK, Europe and the USA. Numerous European countries and the UK have a National Rare Disease Plan. The USA has an Office of Rare Diseases and Undiagnosed Diseases Program. A national Rare Disease Framework or Plan is crucial to ensure the most equitable, effective, efficient and coordinated approach to Rare Disease in Australia.

Recent Progress

In June 2017, Rare Voices Australia (RVA) identified the 6 Strategic Priorities of a National Rare Disease Framework. Long-term, a comprehensive rare disease framework is required. A staged implementation approach would ensure greater sustainability and still enable much needed immediate policy reform in critical areas.

The 2018 Rare Disease ‘Fair for Rare’ Summit will build on the themes and successful approaches of the Fair for Rare campaign and RVA’s Call for a National Rare Disease Framework: 6 Strategic Priorities. We will demonstrate how effective rare disease policy transforms people’s lives with a focus on collaboration to highlight opportunities for implementation and improvement. Our key focus is to ensure policy reform to create real and meaningful change for Australians living with rare disease, now and well into the future.

RVA calls for all Governments to work together to develop a strategy for rare disease. Here’s a snapshot of our recent advocacy wins:

  • Government now prioritising rare disease research
  • Advocacy and workshops held across Australia
  • Improved access to life saving medicines
  • Monthly meetings with Health Minister’s Office