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SCN2A AUSTRALIAResearch · Advocacy · Education
SCN2A AUSTRALIA
Driving Change

Advocacy, research, partnership, built on SCN2A, scaled across DEE.

The substance of what we do beyond direct family support, policy submissions, research partnerships, and international collaborations. Grounded in our SCN2A specialist core, scaled across the broader DEE community. Filed, footnoted, and accountable.

6 SUBMISSIONS FILED · 202612 RESEARCH PARTNERSHIPS4 INTERNATIONAL PEER ORGS
How we drive change

Four streams of work, one strategy.

01

Understanding SCN2A and the broader DEE landscape

Why systemic change is needed, starting with SCN2A-related disorders and extending across the broader DEE community: diagnostic challenges, treatment gaps, and research needs across Australia.

  • What is SCN2A?
  • What is DEE?
  • Why SCN2A and DEE families need support
  • Diagnostic challenges
  • Treatment gaps
  • How we create change
02

Research & innovation

Where we partner, prioritise, and participate. From family advisory networks to natural-history studies.

  • Current partnerships
  • Family Advisory Network
  • Research priorities
  • Publications & presentations
  • Partner with us
03

Policy advocacy

The submissions, the letters, the forums where SCN2A and the broader DEE community are on the agenda. Often with international peers.

  • SCN2A policy & access work
  • DEE Forum
  • Policy submissions
  • What we're advocating for
  • Contact your representatives
  • Media & awareness
04

Optimal Care Pathway

Evidence-based care standards, SCN2A-specific where the science demands it, DEE-wide where the principles apply. From diagnosis through ongoing management, co-designed with families.

  • Best-practice guidelines
  • From diagnosis to management
  • Family input on care priorities
  • Sector consultation
OngoingRESEARCH
Sibling Research Project, UNSW
Partnering with UNSW on research into the experiences and support needs of siblings of children with a DEE.
OngoingADVISORY
Centre of Research Excellence in Paediatric Palliative Care
Appointed to the consumer advisory group, bringing DEE lived experience to national palliative care research.
2026GRANTS
Research and infrastructure grants
Consumer and community involvement across a range of national research and infrastructure bids this year, bringing DEE family perspective to study design, priorities, and patient-preference work.
27 May 2026NDIS
NDIS reform Bill, organisational submission
Submission to the Senate committee on the Securing the NDIS for Future Generations Bill 2026, calling for a specialised DEE pathway.
15 May 2026SENATE
Senate epilepsy inquiry: Collective Voices from the DEE Community
134 families on what life with a DEE is really like, and the six changes they need most. Read the report (PDF).
For policymakers, journalists, and researchers

When you need an evidence-informed voice on SCN2A or the broader Australian DEE community, talk to us.

We respond to media enquiries within one working day. Policy and research partnership enquiries within five.