What is SCN2A?
A short overview of what SCN2A is, covering the basics of genetics, through to the difference between Gain of Function and Loss of Function.
What are clinical trials?
A brief overview of what clinical trials are. Made for families of a child with an SCN2A-related condition, but generic and applicable to many conditions.
Newly Diagnosed Family Guide
A guided introduction covering the first 90 days after diagnosis.
NDIS Navigation Guide for DEE
Access request, plan goals, evidence templates, review tips.
What is SCN2A?
One page. Plain language. Clinician-reviewed.
What is DEE?
One page. Plain language. Defines every term on first use.
Genetic testing, what to ask
A question prompt for your first genetics appointment.
Medical summary template
A one-page child profile for ED visits, new clinicians, casual carers.
School letter template
Editable letter to school explaining your child's condition and supports.
NDIS access request, evidence template
A structured template clinicians can complete to support your NDIS access.
Understanding seizure types
A 45-minute clinician-led session, recorded with audience Q&A.
Developmental considerations
A 60-minute paediatric developmental specialist-led session.
Research priorities report (2026)
What 120 Australian families told us mattered most in DEE research.
Annual Report 2025
Audited financials, program outcomes, family stories.