Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
The Genetic, Undiagnosed And Rare Disease (GUARD) Collaborative is a coalition of the following peak body organisations:
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.
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:
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: