About Us

We are families who became experts.

SCN2A Australia is the leading Australian voice for families affected by SCN2A-related Developmental and Epileptic Encephalopathies (DEE) — bringing lived experience and scientific rigour together to accelerate change.

WHAT WE DO

About SCN2A Australia

Our mission is clear: to improve the lives of everyone affected by SCN2A-related disorders. We raise awareness, support families, advance research, and advocate for the resources and treatments our community needs.

Since 2019, we have built a strong community in Australia and around the world — a foundation for our goal of bringing treatments, and ultimately cures, to our families. There is still no specific treatment for SCN2A, and older therapies have little or no effect. Changing that means working as partners with researchers, clinicians and, above all, families. By understanding how SCN2A shapes daily life and advocating for better outcomes, we work toward a better life for every family, wherever they live.

The Florey Institute – SCN2A team

We work alongside world-leading researchers who dedicate their time to SCN2A. Research into these conditions is slow and costly, and government funding for them is scarce. So we raise funds to power the research that turns discovery into treatment.

We also build understanding: increasing public awareness of genetic epilepsies like SCN2A, and giving families practical and emotional support by connecting them with others who know the journey. Evidence and experience, together.