Online Communities

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Making Connections

An online community gives you the opportunity to connect and share information with others who may be having similar issues and experiences with their epilepsy. These communities are also a good way to find out about the latest happenings, information and events.

Epilepsy Action Australia has a number of online forums and websites catering to different age-groups and circumstances.

Epilepsy Action Facebook Group

The Epilepsy Action Australia Facebook page is the best way to stay connected with the epilepsy community and hear about upcoming events, programs, surveys and studies. Updated regularly, it offers snippets of information and alerts you to the latest epilepsy news and happenings

NEW: Epilepsy Action and Friends Facebook Group

This group is designed to bring together an Australian community of people aged over 25 who have/had epilepsy. This is a place for you to share your own experiences, meet others with epilepsy and gain practical advice so you feel supported living with epilepsy.

Oz-E-Youth Facebook Group

Oz-E-Youth is a closed & private Facebook group for young people with epilepsy aged 16-24. You will be required to register as a client and confirm your age to join. Call us on 1300 37 45 37  or email [email protected] for further information.

Epilepsy: In Memoriam – you are not alone

The Epilepsy: In Memoriam – you are not alone Facebook page is dedicated to family and friends who have lost someone dear as a result of epilepsy. It offers an opportunity to honour a loved one with stories, comments and photos as well as connect with others who may have gone or be going through a similar experience.

Ted-E-Bear Connection by Epilepsy Action Australia

We have a very special program that brings smiles to the faces of young children affected by epilepsy.

When you register as a client and access our services, we send young children affected by epilepsy an adorable Ted-E-Bear  to keep forever. This also comes with an information pack and access to resources to help them and their families understand more about epilepsy, and make them feel supported during a difficult time.

Our vision is that we can provide a Ted-E-Bear to any child whose life is touched by epilepsy – sometimes this will be a child who is newly diagnosed and other times it will be for a small child who has a parent or sibling with epilepsy.

Each bear has a unique name and comes with their very own adoption certificate. A letter is also sent to the child explaining the story of the bears and their origin, as well as an Elly and Elliot Bear activity book.

Each family is enrolled into the Ted-E-Bear Connection program for ongoing support and introduction to the other families via the Facebook page, where families can post photos and stories about their bear’s adventures.

To become a client or register your child as a client email us at [email protected] or phone us on 1300 37 45 37 or click here

We also have some more specialised pages for different age groups. Contact us by filling in the form on the right-hand side of this page for further information.

Our Partner Groups


Epilepsy Action has joined forces with social network and online support group MyEpilepsyTeam so that you can easily connect with others to share daily experiences, provide emotional support, and practical insights.


A free service, Healthshare features over 500 Health Challenge and Healthy Living Communities where you can connect with like-minded people, share your health experiences and offer support. By joining you can also access health information, and questions answered by health professionals.


Epilepsy Action UK provides a safe and secure online community for people with epilepsy and caregivers of people with epilepsy. Anyone over 16 years can join Forum4e, from anywhere in the world.

There are forums, chatrooms, a private messaging system, and each member gets their own ‘blog’ – an online diary that the other members can read.


Livewire is a wholly owned subsidiary of the Starlight Children’s Foundation Australia and is an online community designed just for young people living with a serious illness, chronic health condition or disability, and their families. It is a safe online space where members can connect and share experiences with others who understand what they are going through.

There are online communities: one for members – people with chronic illness aged 12-20 years, and one for parents.