- More than 100 registrations each year
- Facebook reach above 2,000
Partner with GETA
Partner with GETA to be part of the progress DEE families are waiting for.
GET A Team. GET A Target. GET A Cure. GET A Voice. A structured, transparent partnership that supports enduring capability and responsible engagement. Your partnership can help connect families, strengthen research and advance better care for people living with genetic epilepsies and DEEs. GETA brings lived experience, clinical expertise and research together around shared priorities. Join us to help open pathways to the treatments of tomorrow.
The opportunity
Science is moving fast. The patient ecosystem needs to keep pace.
Scientific progress only changes lives when families can reach it.
- 1Diagnosis
- 2Expert care
- 3Community
- 4Research
- 5Trials
- 6Treatment
Australian families still navigate fragmentation across diagnosis, multidisciplinary care, information, research participation, clinical trials and treatment access.
The opportunity: build the connective infrastructure now, so Australia is ready for the treatments of tomorrow.
Why GETA
One community. Many conditions. A shared connection to infrastructure.
GETA connects what no single rare-disease organisation can efficiently build alone — bridging families, clinicians, researchers, industry and government around common priorities. We solve collectively, so individual patient advocacy groups (PAGs) don’t have to solve on their own.
01Families & PAGsLived experience at the centre of every decision.
02CliniciansSpecialist networks and care pathway development.
03ResearchersShared infrastructure and research priorities.
04GovernmentPolicy, advocacy and equitable access reform.
05IndustryResponsible, transparent, patient-centred engagement.
A proven national platform
Growing reach, year after year.
The Genetic Epilepsy Family Conference has connected families, researchers and clinicians every year since 2017 — in person, by livestream and on demand.
- 200 attendees and over 2,000 unique livestream visitors on the day
- Posts reached more than 25,000 people across 71 countries
- Twitter posts reached over 180,000 in the medical and scientific community
- Over 350 registrations: 21% clinicians, researchers and industry, 79% family members
- More than 250,000 Twitter impressions
- 340 registrations from every Australian state, the USA, New Zealand, Canada, Europe and Asia
- 5,250 Facebook and 96,856 Twitter reach within 24 hours
- Around 80 in person and 289 unique livestream views
- 1,070 website visits on the day
- 388,000 Twitter impressions for #GETA2022
- More than 50 DEE families and over 100 attendees connected, relaxed and had fun at the zoo
- Over 200 in person, 90 at dinner, lab tours at capacity
- 180 on the livestream and 7,700 Facebook reach
- Recordings available on YouTube
- 200 in person, lab tours at capacity
- Thousands of online replays and 23,000 social views
- 42 event posts averaging 500 engagements, up to 3,000 for reels
- 350 tickets sold
- Facebook reach of 24,000
- Recordings available on YouTube
Four connected themes
A platform for trusted, structured collaboration.
GETA provides a trusted, structured collaboration platform that strengthens DEE-specific Patient Advocacy Groups (PAGs). Four connected themes turn a foundational partnership into practical ecosystem capability.
Responsible partnership
Meaningful strategic value, with clear guardrails.
The partnership creates understanding, connectivity and capability without purchasing access, influence or exclusivity.
Governance guardrails
- Patient benefit firstActivities serve patients and community value.
- GETA independenceGETA controls strategy, advocacy and communications.
- TransparencyFunding and relationships are appropriately disclosed.
- No preferential accessNo preferential access to patients, samples, data or research decisions.
- Clear agreementsRoles, deliverables, decision rights and review processes are documented.
Strategic value for partners
- Community understandingDeeper insight into patient and family needs.
- Patient-informed thinkingIndependent perspectives inform research and development.
- Ecosystem connectivityStronger relationships across Australia’s rare-disease ecosystem.
- Research readinessContribution to Australian research and clinical-trial capability.
- Infrastructure legacyEnduring capability beyond a single program.
- LeadershipVisible, responsible commitment to strengthening the ecosystem.
Funding does not confer preferential access to patients, data, biosamples, clinical services, research decisions, exclusivity or GETA advocacy.
Next steps for GETA
Harness collaboration. Strengthen the coalition. Mobilise the next decade.
Foundational partnerships help GETA move from ambition to action — building the organisation, infrastructure for DEEs and delivering GETA27.
Let’s talk
Partner with GETA to build the conditions for better outcomes for DEEs.
Whether you are a company, a foundation or an individual, we’d love to hear from you. Tell us what you’re interested in and we’ll send you the full prospectus.