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National Strategic Action Plan for Rare Diseases

Today the Hon Greg Hunt, Minister for Health, launched the first Australian National Strategic Action Plan for Rare Diseases at Parliament House in Canberra.

This plan commits the Australian Government to action under three pillars:

  •         Awareness and Education
  •         Care and Support
  •         Research and Data

The plan describes work that needs to be done to ensure we have the right health professionals working together providing care for people living with TSC and other rare diseases. It will build on the dedication of rare disease researchers, clinicians, advocates and community members.

The plan plays an important role in ensuring that the people who make decisions about how our medical research and health systems are organised and funded understand rare diseases and are working together to improve research, diagnosis, treatment and support.  Minister Hunt announced funding for several initiatives in the plan, including for health professional education.  However, the launch of the action plan does not mean any immediate changes for research, diagnosis, treatment or support for Australians with rare diseases.

Clare Stuart, former General Manager of Tuberous Sclerosis Australia (TSA), was involved in founding Rare Voices Australia and has been a member of the steering committee for this project.  Clare attended the launch, which was timed to celebrate International Rare Disease Day, which this year is being held on the rare day of 29 February.

Read the full action plan here