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SCN2A AUSTRALIA · v.2026

Families who became experts.
Evidence that moves policy.

We are the authoritative, family-led voice at the intersection of lived experience and scientific rigour. Born from SCN2A. Now advocating across the broader DEE community, submission by submission, partnership by partnership.

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What we stand on

Five pillars that shape every submission and partnership.

They are not slogans. They are tested in every paper we sign, every research priority we set, every family we connect.

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Where to start

Our work serves several audiences. Pick the doorway closest to why you're here.

03 PATHWAYS · 01 ORG
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The research network, built around families

23 research projects. 12 institutions. $39M+ in research funding influenced.

The community is not just a research subject. It is an active partner shaping the research agenda.

RESEARCH NETWORK · EVIDENCE REGISTER
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The work, in numbers.

FROM THE EVIDENCE REGISTER · MAY 2026
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In our own words

The founding voice.

"SCN2A Australia began the way so many rare-disease communities do, a handful of families, each feeling alone, who found each other. That foundation of lived experience is still at the heart of everything we do."

KP
Kris Pierce
Founder & Director · mother of Will
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On the record · monthly

Subscribe to The Ledger.

One email a month. Three to four items. Policy updates, research opportunities, community events. One primary call to action per issue. Unsubscribe any time.

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