Research & advocacy

Global collaboration.

SCN2A is rare. The expertise, the research, the clinical experience, and the families who understand it are spread across the world. Global collaboration is not aspirational for SCN2A Australia, it is essential.

12 INTERNATIONAL ROLES · SINCE 2020FOUNDED SCN2A GLOBAL LEADERS NETWORKIBE CONVENING · 2026

SCN2A Global Leaders Network

A network we founded and convene.

In 2020, SCN2A Australia founded and launched the SCN2A Global Leaders Network, convening SCN2A patient advocacy organisations and community leaders from around the world to coordinate on research priorities, family support, global awareness, and collaborative initiatives.

What began as a convening has grown into an active peer network. The SCN2A Global Leaders Network now:

Coordinates SCN2A Global Awareness Days, unified international campaigns raising visibility for SCN2A-related conditions across social media and community channels worldwide
Drives collaborative projects across member organisations, sharing resources, research updates, and advocacy strategies across jurisdictions
Creates a direct channel between Australian SCN2A families and the global community of families, researchers, and advocates working on the same condition

International roles

Memberships and formal positions across epilepsy, rare disease, HTA, and regulatory science.

OrganisationRole / Engagement

IBE, International Bureau for EpilepsyCommunity Council member; co-convening SCN2A Global Leaders 2026

ILAE, International League Against EpilepsyCare Pathways Task Force

Global GenesCorporate Council · previous Chair of Global Leaders Council

Rare Diseases International (RDI)Affiliated member, UN, WHO, international health policy

Rare Epilepsy Network (REN)Former Coordinating Committee · International Workgroup Lead · ongoing member

Complex and Rare Epilepsies (CREA)Participating member

IRDiRCTask Force on Regulatory Convergence

HTAiCommittee member, rare disease & patient involvement

E+ Epilepsy Plus AllianceMember, rare and complex epilepsies

Epilepsy Foundation Global Research AllianceBoard of Management (2023–2025)

ISPEPMember, International Society for Patient Engagement Professionals

N-1 CollaborationMember, individualised and ultra-rare treatments network

Why it matters

Why global collaboration matters for Australian families.

For a condition as rare as SCN2A, no single country has all the answers, or enough families to run a clinical trial alone. SCN2A Australia's international roles serve a direct purpose for Australian families.

Access to global research

Our network connections mean Australian families are aware of, and connected to, relevant clinical trials, natural-history studies, and research opportunities as they arise, not months after international families have already enrolled.

Influence over the therapeutic pipeline

Treatments like elsunersen and relutrigine were developed with input from international patient communities. Our presence in global networks ensures Australian families have a voice in shaping how therapies are developed, tested, and evaluated for regulatory approval.

Policy that reaches Australia faster

Our roles in IRDiRC's regulatory convergence work and HTAi are specifically about closing the gap between international drug approval and Australian access, ensuring HTA processes and regulatory frameworks are fit for rare-disease realities.

Peer support that transcends geography

The SCN2A Global Leaders Network and our connections through IBE and Global Genes mean Australian families can be connected to peers, researchers, and clinicians anywhere in the world, because the right expert or the right family may not be in Australia.

SCN2A is too rare for any one country to solve alone. Our role is to make sure Australian families are at the table, not waiting for the results.

 From our convening work.

2026

SCN2A Global Leaders Convening.

In 2026, SCN2A Australia is working with IBE to convene SCN2A global leaders formally for the first time, bringing together patient advocacy organisations, researchers, and clinicians from across the SCN2A world.

This represents a significant step toward a permanent international SCN2A leadership structure with the capacity to coordinate research priorities, share resources, and amplify advocacy globally.

Connect with us

International organisation, researcher, or family advocacy group?

If you would like to partner with SCN2A Australia or connect to the SCN2A Global Leaders Network, we’d like to hear from you.

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