Make a submission to the Senate Inquiry

Families living with rare and genetic epilepsies navigate a complexity that most health systems are not built to see. The lifetime care burden, the diagnostic odyssey, the gaps between systems — these experiences deserve to be on the parliamentary record.

Right now, they can be.

The Australian Government Department of Health, Disability and Ageing Senate Community Affairs Committee has launched a formal inquiry into epilepsy care in Australia, with a specific focus on drug-resistant epilepsy. This is a genuine opportunity to ensure that DEEs and other rare and genetic epilepsies — conditions that demand lifetime, multi-system support — are properly distinguished and recognised in national policy.

📝 FOR FAMILIES — COMPLETE OUR SURVEY — closes 28 April Short, low-effort, and trauma-informed. Takes just a few minutes. Responses are de-identified and aggregated to inform our collective submission, which will be shared with partner organisations. → https://lnkd.in/ghh6J24N

📋 FOR EVERYONE — SUBMIT DIRECTLY TO THE INQUIRY — closes 15 May. Anyone can make a submission — families, clinicians, researchers, and organisations. A personal submission goes straight to government. Dot points are fine. Confidentiality is available. Every perspective adds to the evidence base. → https://lnkd.in/gRFSFmAH

📋 WANT SOME HELP GENERATING A SUBMISSION – Download a Word document template to help you complete your own submission.

The inquiry is seeking input on diagnosis pathways, access to specialists, NDIS, hospital and school experiences, clinical trial access, and what needs to change.

If you work alongside families affected by rare and complex epilepsies — as a clinician, researcher, advocate, or organisation — I would encourage you to submit your own evidence, share this post widely, and help amplify these voices at a national level.

Lived experience shared is evidence that cannot be ignored.

Please share. 💜

GETA:  GET A Team, GET A Target, GET A Cure