Rare Disease Advocacy


The Genetic, Undiagnosed And Rare Disease (GUARD) Collaborative is a coalition of the following peak body organisations:

  • Genetic Support Network of Victoria.
  • Genetic Alliance Australia (NSW).
  • Syndromes Without A Name (SWAN) Australia.

The GUARD Collaborative stands together to represent people living with genetic, undiagnosed and rare disease and those who support them. We strive for a fair, equitable and collaborative approach to health and wellbeing for all members of our population.

Advocacy through committees and advisory groups

Our CEO, Heather Renton, is a member of a number of committees and advocates for improved health and disability outcomes for our members. These committees include:

  • Melbourne Genomics Health Alliance – Community Advisory Group.
  • Child Unlimited Consumer Advisory Group Member.
  • Quality of Life in Kids (QUOKKA) – Consumer Advisory Group Member.
  • Genetic Undiagnosed and Rare Disease Collaborative – Founding Member.
  • Rare Disease Now – Community Engagement Member.
  • National Congenital Anomaly Advisory Group.
  • Masters of Genetic Counselling Course, University of Technology Sydney (UTS) – Community Advisory Group.
  • Human Genetic Society of Australasia – Education, Ethics and Social Issues Committee.
  • Undiagnosed Diseases Network International – Patient Engagement Group.
  • InGeNA – Access and Equity Working Group. 

The National Strategic Action Plan for Rare Diseases

The National Strategic Action Plan For Rare Diseases focuses on systemic reforms to improve outcomes for all rare disease patients and the communities that support them.

The plan was funded by the Department of Health and developed by consulting and collaborating with the rare disease sector. SWAN Australia’s CEO, Heather Renton, contributed to the plan’s development as a Steering Committee Member.

The plan comprises three core pillars, with each pillar outlining priorities, actions and implementation areas. The pillars are:

  1.  Awareness and Education
  2.  Care and Support
  3.  Research and Data

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