GET A Team.
GET A Target.
GET A Cure.
GET A Voice.
Genetic Epilepsy Team Australia (GETA) unites people living with genetic epilepsies / DEEs, families, carers, advocacy groups, clinicians and researchers to improve lives and build a brighter future. Guided by lived experience, we connect families with trusted information and strengthen their voice in research and care. Together, we advance care, champion new treatments and work towards cures. Join us in turning shared knowledge, experience and hope into progress.
Our voices
Our families. Our needs. A call for change.
Produced by GETA board member Sara James for this year’s Senate inquiry, this video brings together families, clinicians and researchers to explain what Australians living with developmental and epileptic encephalopathies (DEEs) need—and why change cannot wait. Professor Howell emphasises the life-threatening nature of DEEs, while Professor Scheffer explains their impact far beyond seizures, affecting the whole family. GETA board member Danielle Williams reinforces that these conditions are complex, severe and lifelong. Fellow board member Leah Duffy highlights the promise of Australian research—and the urgent need for faster access to treatments. Associate Professor Emma Palmer points to comprehensive cancer care, where a whole team comes together from the outset, with psychological support, social workers and access to clinical trials. DEE families need that same coordinated approach: care for the whole person, support for the whole family and pathways to new treatments throughout life.
Find your way
Where would you like to start?
GETA brings families, researchers and partners together. Tell us who you are and we’ll point you to the right place.
I’m a family
You are not alone.
Whether you have a new diagnosis or years of experience, there is a community that understands. Meet other families at our conference, find the advocacy group for your child’s gene, and hear from the researchers working on cures.
- Find your advocacy groupSearch by gene or condition to find the patient groups that support families like yours.
- Come to the conferenceThe Genetic Epilepsy Family Conference brings families and experts together every year, in person and online.
- Take part in researchStudies currently recruiting people with DEEs and their families.
Who we are
A team of parents working alongside world leaders in genetic epilepsy / DEEs.
Genetic Epilepsy Team Australia (GETA) is a parent-led community bringing lived experience together with leading clinicians and researchers. Our children live with different rare genetic epilepsies, but we share a determination to build a brighter future. Together, we champion Australian and International research, connect families with knowledge and support, and ensure lived experience helps shape progress towards better care, new treatments and cures.
About GETA→
GETA’s Mission
GET A Voice
“Our individual diagnoses may be rare, but collectively, our community is not.”
GETA represented the Genetic Epilepsy and Developmental and Epileptic Encephalopathies (DEE) community at the Senate Inquiry into Epilepsy in Australia, with the endorsement of 13 patient advocacy groups. Together we are calling for earlier diagnosis, coordinated lifelong care, access to precision treatments and clinical trials, stronger research infrastructure, and better support throughout life.
From our Facebook
News from the GETA community
Events, research milestones and stories from families and supporters across Australia, straight from our Facebook page.
Catch up on our latest photos, event news and community updates over on Facebook.
See our latest postsSupport GETA
Support GETA to build better conditions for Australians with DEE's.
Partner with us or support us. Get in touch and we’ll tell you how your support can help. Our community is stronger with you. Whether you’re a family seeking connection, a patient advocacy group working towards shared goals, or a sponsor ready to make a difference, there’s a place for you at GETA. Together, we can strengthen support, advance better care and help scientific progress reach families living with genetic epilepsies and DEEs.