Advocating for the Lynch Syndrome Community

As the only charity dedicated to improving the lives of the tens of thousands of Australian’s affected by Lynch syndrome, Lynch Syndrome Australia campaigns consistently across many platforms.

We advocate for individuals, families and the wider community on issues including:

  • Fair access to medical experts with knowledge about Lynch syndrome across Australia
  • Discrimination in the workplace and in access to healthcare
  • Improved research into Lynch syndrome
  • improved national standards of medical management and care

Identifying and Representing the Many Needs

In 2015, Lynch Syndrome Australia conducted the first-ever international survey of Lynch syndrome gene carriers to identify their unique needs. This survey provided valuable information which is being utilised to develop strong plans of action for the future and isolate key areas for advocacy in upcoming years.

Our Advocacy Impact

Making our voices heard

As the leading voice of individuals and families living with Lynch syndrome in Australia, we are dedicated to ensuring that relevant issues and concerns are addressed. Lynch Syndrome Australia is a member of 

  • The Australian Cancer Consumer Network
  • Cancer Voices Australia
  • Cancer Voices NSW
  • The Consumers Health Forum of Australia
  • Health Consumers of Rural and Remote Australia

Supporting life-saving research

We partner with Universities, non-government organisations and research groups to support research into Lynch syndrome, its treatment and consequences for families, for medical practice and for communities and have presented at research conferences including COSO. Our research partners include:

  • Macquarie University
  • University of New South Wales
  • Translational Cancer Research Network
  • Cancer Council NSW

Identifying needs

We actively engage with the Lynch syndrome community, locally and globally, to ensure we understand the needs of individuals and families with Lynch syndrome, and reconcile this against the current medical knowledge and standards of medical practice. We undertake needs analyses to direct our efforts to those activities and outcomes that have greatest benefit in addressing the concerns of families with Lynch syndrome.