A sector-wide report from the DEE Roundtable 2026 has been accepted by the Senate Inquiry into Epilepsy in Australia, calling for a national body to coordinate the rare and complex epilepsies sector.
A Shared Vision for the Future: Rare and Complex Epilepsies in Australia, a sector-wide report from the DEE Roundtable 2026, has been accepted by the Senate Inquiry into Epilepsy in Australia, putting a concrete reform agenda in front of the people who can fund it.
The report is the output of a full-day Roundtable in Brisbane on 1 May, bringing together around 55 people from 34 organisations across research, clinical care, policy, industry and lived experience. SCN2A Australia helped fund it; our founder, Kris Pierce, chaired the Steering Committee alongside colleagues from Rare Diseases NSW, UNSW Sydney, the Royal Children's Hospital, Murdoch Children's Research Institute, Sydney Children's Hospitals Network, Rare Insight Advisory, Health Advance Connect, FAST Australia and Genetic Epilepsy Team Australia, representing the sector as a whole.
Its finding is direct: Australia does not lack expertise in developmental and epileptic encephalopathies (DEEs), which affect an estimated 1 in 590 Australian children. It lacks the national mechanism to align that expertise. Clinical care, disability, education, research and advocacy operate as five disconnected systems, and families pay for that fragmentation through delayed diagnosis, inconsistent care and inequitable access to emerging therapies.
The Roundtable's answer is the proposed National Rare and Complex Epilepsies Collaborative: an independent body to set shared national priorities and give the sector a single, authoritative voice to government. That's the reform the sector is now asking government to back, and the Senate Inquiry and the lead-up to the 2027 Federal Election are the window to secure it. Read the full report for the evidence base and the roadmap for building it.
The Steering Committee isn't waiting for the Collaborative to be fully established before pushing on that: it's already leading a project on the sector's low-hanging fruit, with UNSW and patient groups PURA Australia, FAST Australia, SCN2A Australia and GETA. Dr Neil Deacon leads it; if your organisation wants a role in pushing for this reform, contact him at neil@healthadvanceconnect.com.
Thank you to our sponsors: Lundbeck Australia, SCN2A Australia and UCB Australia.
Our formal submissions to government inquiries, grounded in evidence and the lived experience of families living with developmental and epileptic encephalopathies.
In May 2026 we made a formal submission to the Senate Standing Committee on Community Affairs, setting out the evidence, priorities, and reforms the DEE community needs, alongside the collective voices of 134 families. Read the post and download both documents.
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