Rare Disease Advocacy
About GUARD
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, Alison McIvor, is a member of the Genetic Undiagnosed and Rare Disease Collaborative Australia and the Human Genetic Society of Australasia – Education, Ethics and Social Issues Committee and advocates for improved health and disability outcomes for our members.Â
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:
- Â Awareness and Education
- Â Care and Support
- Â Research and Data