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 page

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

Epilepsy Action & Friends online support group

This 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 own experiences, meet others with epilepsy and gain practical advice so you feel supported living with epilepsy.

Youth Facebook Group for people with epilepsy aged 16-24

This is a great place for young people to connect, share experiences and support each other. There will be weekly topics, competitions and opportunities to make your own video to share.  We would love you to join us 💜  Oz Youth Beyond Epilepsy

NEW: Healthy Pregnancy with Epilepsy online support group

Healthy Pregnancy with Epilepsy is a private group and a dedicated online space for women with epilepsy to share and discuss their experiences of pregnancy, family planning, parenting a new-born, infant, toddler and beyond.

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 love bringing 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 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

Australian Women with Epilepsy – Facebook group

An online support group for women living with epilepsy to speak openly about what they are going through, with people that understand their story. Designed to encourage and support each other, be a shoulder to lean on, an ear to listen, as well as having a good laugh together and celebrating our successes. Go to the AWE website for further information as well.


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.

The online community is for young people aged 12-20 years living with illness or disability, and their siblings.