Patients diagnosed with rare cancers often face poor survival outcomes and experience limited access to effective therapies, making clinical trials potentially the only viable treatment option.

To help ensure Australian rare cancer patients can access appropriate clinical trials, we co-hosted a national policy roundtable series in partnership with Rare Cancers Australia, convening people with lived experience, clinicians, researchers, policymakers and industry representatives, to identify practical ways to:

  • increase the number of clinical trials for people with rare cancers in Australia;
  • better connect clinicians and patients with the trials and information they need and support people with rare cancers to take part in trials, regardless of where they live; and
  • strengthen Health Technology Assessment pathways to improve subsidised access to medicines beyond the trial setting.

The key insights and actions from this series are detailed in the report available here

Thank you to our partner, Rare Cancers Australia, the series sponsors, speakers, all attendees, and especially our patient advocates who generously shared their time, ideas and commitment to maximising rare cancer clinical trials across Australia.

Kurt Lackovic PhD MBA GAICD
Chief Executive Officer