Useful organisations and contacts

This page provides information about some organisations and contacts TSA (Tuberous Sclerosis Australia) is aware of across Australia that may be useful to people living with TSC (Tuberous Sclerosis Complex). We welcome ideas of other contact details to add to this page. Please send suggestions to [email protected]

Aspect provide information and services to meet the needs of autistic people and their families.

Carer Gateway is a free service from the Australian Government which offers help and advice as well as support including phone counselling and peer support to all carers across Australia. You can find more information on state and territory contacts here.

Disability Australia Hub has information on organisations that support people with disabilities.

Disability Gateway is a great resource to link to disability supports and services. They have information on financial supports, aids and equipment, housing and transport.  It is a really helpful site that holds a wealth of information on government and community supports right across Australia.

Epilepsy Action provide epilepsy specific services or advice,

Epilepsy Action Australia’s Epilepsy Nurse Line is available on 1300 37 45 37 to answer any questions on epilepsy, Australia-wide.

friendlyfaces.info provides country people and their families/carers, with practical information about hospitals, accommodation and support services when healthcare is required in an unfamiliar city a long way from home. You can also call them on 1800 014 234.

Head to Health is an Australian government website service offering mental health resources and supports.

Kiind offers western australia based support for families navigating disability.

LAM Australia Research Alliance is a not for profit charity that exists to support Women Living with LAM (Lymphangioleiomyomatosis) in Australia. It aims to provide peer support and social connections and to build awareness and knowledge of LAM in the community and to fund research to improve the health outcomes of women living with LAM. The Association is run by a volunteer committee who are supported by generous professionals and medical experts who provide their services free of charge.

New South Wales Specialised Intellectual Disability Health Teams provide a multidisciplinary health service for school aged children, adolescents and adults diagnosed with intellectual disability and complex health needs.  The service, which is free, works in conjunction with your GP, paediatrician, and/or other health services and disability service providers and provides medical and health consultations, including health care plans, advice and referrals. have a current unresolved health-related problem/health care need that cannot be met by usual care. Referrals to the service can be made by your GP and/or other specialist health care professional. 

There are 6 teams in NSW. Contact details for each are shown below:

Hunter New England Local Health District Team Email: [email protected] Phone: 02 49246067 Eligible clients in Central Coast Local Health District can be seen by the team in Hunter New England Local Health District.

Northern Sydney Local Health District Team Email: [email protected] Phone: 02 89683400 Eligible clients in Mid North Coast and Northern NSW Local Health Districts can be seen by the team in Northern Sydney Local Health District.

South Eastern Sydney Local Health District Team Email: SESLHD-SpecialistIntellectualDisabilityHealthTeam@health.nsw.gov.au Phone: 02 85661222 Eligible clients in Nepean Blue Mountains and Illawarra Shoalhaven Local Health Districts can be seen by the team in South Eastern Sydney Local Health District.

South Western Sydney Local Health District Team Email: [email protected] Phone: 02 97941820 Eligible clients in Southern NSW Local Health District can be seen by the team in South Western Sydney Local Health District.

Sydney Local Health District Team Email: [email protected] Phone: 02 93781364 / 93781100 Eligible clients in Western Sydney Local Health District can be seen by the team in Sydney Local Health District.

Western NSW Local Health District Team Email: [email protected] Eligible clients in Far West and Murrimbidgee Local Health Districts can be seen by the team in Western NSW Local Health District.

People with Disability Australia provide research, support and advocacy for people with disability.

The Spectrum offers supports and services for autistic adults.

Trapeze provides great transition resources to help young people who are moving from child to adult health services. Although based out of the Sydney Children’s Hospitals Network, Trapeze has factsheets and checklists that are useful no matter where you live.