Partners

We do not work in isolation.

Our impact, in research, advocacy, policy, and community, is built on genuine partnerships with organisations that share our commitment to improving outcomes for people living with SCN2A and DEE.

NATIONAL PARTNER NETWORKGLOBAL COLLABORATIONSAUSTRALIAN PEAK BODIES

Research partners

Universities, clinical-research units, and not-for-profits whose work directly benefits our community.

Featured partner

Angel Aid / Raregivers, Inc.

US-based not-for-profit providing specialised wellbeing support for carers in the rare-disease community.

angelaidcares.org

Raregivers's Angel Aid caregiver wellness program, a six-week online group wellness retreat, was adapted and piloted for the Australian rare-epilepsy community through a partnership led by SCN2A Australia.

The Australian pilot was co-designed with a multidisciplinary team and formally evaluated in a peer-reviewed study published in the Orphanet Journal of Rare Diseases (2025). The findings supported meaningful benefits for carer wellbeing and social inclusion.

Learn about Angel Aid Read the evaluation paper

Advocacy & sector partners

Working alongside Australian advocacy organisations, shared objectives, not administrative formality.

Epilepsy Foundation Australia

Joint submission to the NDIS (2024) advocating for improved access pathways for children with rare and complex epilepsies. National peak body for people living with epilepsy.

epilepsyfoundation.org.au

Genetic Epilepsy Team Australia (GETA)

National network connecting Australian clinical teams working with children and families affected by genetic epilepsies. We are an active participant and conference contributor.

geneticepilepsyteam.com.au

Rare Voices Australia

National peak body for people living with rare diseases in Australia. We work within the rare-disease advocacy ecosystem that Rare Voices Australia leads.

rarevoices.org.au

Epilepsy Association of Australia

The national body connecting epilepsy organisations across the country. SCN2A Australia is a member.

epilepsy.asn.au

Child Unlimited

Co-contributors to a budget submission (2023) supporting investment in chronic-illness research and consumer-engagement infrastructure.

RDNow · MCRI

Member of the Community Engagement Committee at the Murdoch Children’s Research Institute.

Global network affiliations

International memberships and formal roles, not isolated by geography.

OrganisationRole / Engagement

International Bureau for Epilepsy (IBE)Community Council member · co-convening SCN2A Global Leaders 2026

ILAE, International League Against EpilepsyCare Pathways Task Force

Global GenesRare Global Advocacy Leadership Council, previous Chair

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

E+ Epilepsy Plus AllianceMember, rare and complex epilepsies

IRDiRC, International Rare Diseases Research ConsortiumTask Force on Regulatory Convergence

ISPEP, International Society for Patient Engagement ProfessionalsMember

HTAi, Health Technology Assessment InternationalCommittee member, rare disease & patient involvement

Australian network memberships

Epilepsy Association of Australia

Epilepsy Society of Australia

Neurological Alliance Australia

Neurological Alliance Queensland

Rare NSW

RDNow Community Engagement Committee, MCRI

Become a partner

Working on what we work on?

We welcome partnerships with organisations whose work aligns with improving outcomes for people living with SCN2A, DEE, and related rare neurological conditions, particularly collaborations that treat community expertise as a genuine asset.