Genetic epilepsy resources
Useful links and resources for children and families with genetic epilepsies
General information on genetics
Support groups and information
Genetic Epilepsy Team Australia (GETA)
GETA is a group of parents whose children have rare genetic epilepsy.
Their mission is to help researchers cure genetic epilepsy. They convene an annual conference on genetic epilepsy for families, researchers and clinicians bringing together the latest research in genetic epilepsy and developmental and epileptic encephalopathies (DEEs).
To be notified about the next conference, follow GETA on Facebook or Twitter, or email hello@geneticepilepsyteam.com.au.
Epilepsy Foundation
The Epilepsy Foundation is a not-for-profit organisation supporting people living with epilepsy, their families, carers and professionals.
- National Epilepsy Support Service (NESS) is a free, Australia-wide phone and online service offering information, guidance and practical support for individuals, families, carers, schools, and health professionals. NESS is available Monday to Friday from 9 am to 5 pm (AEST). Contact NESS on 1300 761 487 or the Epilepsy Smart Australia website.
- New Diagnosis Program: This program provides parents of children under 12 years old diagnosed within the past 12 months with information, family-focused workshops, peer connection and one-to-one support from experienced epilepsy advisors.
- Peer support groups: Delivered in partnership with Epilepsy Smart Australia, peer-led support groups provide online and face-to-face spaces to connect, share experiences and build community.
- Navigating Epilepsy roadmap: This downloadable guide offers practical advice and support after diagnosis for families of children with rare or genetic epilepsies.
- Education and training programs are available for families, teachers, early childhood educators and disability care workers.
For more information, visit the Epilepsy Foundation on Facebook and Instagram.
Epilepsy Action Australia
Epilepsy Action Australia is a National NDIS Service Provider of professional education and services for people with epilepsy. They have several relevant online forums. While these may be useful, none are specifically just for carers of a child with intractable epilepsy.
- MyEpilepsyTeam: Epilepsy Action has partnered with MyEpilepsyTeam, a social network and online support group for people living with epilepsy (including family members and carers).
- Epilepsy Action Facebook page: This Facebook page gives regular updates about upcoming events, programs, surveys and studies. It offers snippets of information and alerts you to the latest epilepsy news and happening. However, it does not provide opportunities for interactive peer support (other than via comments).
- Epilepsy Action & Friends Online Support group: This Facebook group is designed to bring together an Australian community of people aged 21 and over who have/had epilepsy or know someone with epilepsy. This is a place for you to share your experiences, meet others with epilepsy and gain practical advice so you feel better supported. There are currently 84 members, with about 3 posts a month.
Belongside Families
Belongside Families (previously known as Kindred) provide a number of services to support parents and carers of children with disability, developmental delays, autism and rare or genetic conditions.
- Virtual MyTime connects parents and carers raising a child with medical needs. It’s free to attend, fully online and led by a trained parent peer facilitator with lived experience.
- In-person catch ups are available in select areas in NSW. It involves events such as coffee meetups, guest speaker sessions and family gatherings. It is free to attend.
For more information, contact Belongside Families by emailing info@belongsidefamilies.org.au.