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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

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 2014 Rare Voices Australia (RVA) undertook a National Roadshow seeking multi-stakeholder feedback into the issues facing the rare disease community. This feedback led to the development of guiding principles and objectives.  In 2015 RVA held a Rare Disease Summit which resulted in the presentation and endorsement of a Communique - principles and objectives to progress a National Plan for Rare Diseases. RVA invite individuals/organisations to endorse the Communique via the Rare Voices Australia website.

A National Plan for Rare Disease is vital to achieve Fair for Rare for all Australians impacted by rare disease.