We connect families, researchers and the systems that shape their care.
SCN2A Australia began as a support network for families navigating SCN2A-related disorders, one of the genetic causes of developmental and epileptic encephalopathy. Through that work we built deep expertise in diagnosis, research, advocacy and the systems families have to navigate.
From a kitchen-table conversation to Senate submissions: community-led advocacy, in action.
Different doorways into the same work.
For families & carers
Newly diagnosed or navigating DEE daily: find information, connect with others, and access our guides.
Use our navigation tool
A plain-English, clinician-reviewed guide that opens into clear pathways. Start wherever your questions are.
For clinicians & researchers
Partner with us, access our registry, and connect with the families shaping research priorities.
Community-led advocacy, grounded in lived experience and evidence.
Those numbers didn't come first — they grew from families organising, partnering with researchers, and carrying the community's voice into the decisions that shape care.
SCN2A Australia acknowledges the Kabi Kabi peoples and the Jinibara peoples, the Traditional Custodians of the lands and waters we all now share, and pays respect to Elders past and present.