Epilepsy family support agencies
Having a child with epilepsy often places additional demands on parents. Siblings of children with epilepsy are similarly affected.
Families often have to undergo adjustments after a child is diagnosed with epilepsy. Support is available for:
- Patients with epilepsy
- Parents of children with epilepsy
- Carers and siblings
Family support
Community support for families and children living with epilepsy. Information on services such as individual service plans, individual client education, seizure management planning, and camps for young people.
National coalition of epilepsy organisations to keep communities informed on the latest medical breakthroughs, social research, publications, news and policy.
Caregiver support
Caregiver support
- Belongside Families (formerly Kindred): Support for parents raising children with a disability. Formerly Reframing Disability, Kindred is a community for families raising children with a developmental delay, disability or medical needs. They offer free programs, resources, and a supportive community to help build skills, knowledge and confidence.
- Raising Children Network: A web-based resource for parenting newborns to adolescents, including a section on children with special needs. You can find information on your child’s disability and various topics such as sibling issues to disability rights and the law. There is a discussion forum for parents to share ideas and connect with other parents of children with disabilities.
- Carers Australia: Represents carers in Australia and works with carer associations in each state. They provide phone support and aim to improve the health, wellbeing and resilience of carers.
- Carers NSW: A state organisation aiming to improve the health, wellbeing and resilience of carers.
Phone: 1800 242 636 - Young carers NSW: Information for young people (under 25 years) who are carers and provides a forum for sharing ideas moderated by a trained counsellor.
- Australian government carer gateway: A national service funded by the Australian Government that includes a website and phone service for carers to access practical information and support.
Siblings and young people
- Siblings Australia: Provides support for siblings of people with special needs. Provides information for parents on issues for siblings. Has a variety of print and web-based resources and networking opportunities for siblings and a web forum for young adult and teenage siblings.
- Livewire: Provides a free and safe online community for children and young people (10-21 years) with a serious illness, chronic health condition or disability. Also provides separate online communities for the siblings and parents.
- Reach Out: Online service that provides young people with information, support and connections to help them manage health issues and improve their mental health and wellbeing. This service is moderated by trained staff.