Childhood Dementia Initiative : Australian support services directory

Service Directory

This service directory is a starting point for Australian families of children with dementia who are looking for diagnosis-specific support organisations and access to disability, carer and palliative care services. This directory will be updated regularly to ensure it includes national organisations that provide information, services and /or support for children with dementia and their families.

If you are in an emergency situation, please call 000 immediately.

Australian Services for childhood dementia

	Dementia Australia	Dementia Australia represents the 487,500 Australians living with dementia and the almost 1.6 million Australians involved in their care. The organisation provides information, education and support services.
	Dementia Support Australia	Dementia Support Australia (DSA) has trained consultants who understand childhood dementia and its related symptoms, the impact on the person with dementia, carers and families. DSA provides professional and practical strategies and recommendations to support families caring for their child to improve their quality of life.
	RARE Helpline	The RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease often face. The RARE Helpline supports people to connect with existing information that is reliable; provides resources that respond to people’s specific needs; helps to increase people’s health literacy and engagement with care and support services; and assists in connecting people with existing health services and/or professionals where possible.

Australian Government Initiatives

	Carer Gateway	Carer Gateway is an Australian Government program providing free services and support for carers via a new Australia-wide network of Carer Gateway service providers.
	Disability Gateway	The Disability Gateway will assist all people with disability, their families and carers to locate and access services across Australia.
	Head To Health	Head to Health can help you find digital mental health services from some of Australia’s most trusted mental health organisations.
	National Disability Insurance Scheme	The NDIS can provide all people with disability with information and connections to services in their communities.
	Paediatric Palliative Care	This website is a one-stop destination for quality paediatric palliative care information and resources for families/carers, young people and health professionals experiencing paediatric palliative care.

Disease Specific Organisations

	Australian NPC Disease Foundation	A registered charity dedicated to supporting families, raising awareness and funding research for a cure of Niemann-Pick disease type C.
	Batten Disease Support Research Australia	BDSRA Australia is dedicated to improving the lives and well-being of patients and families affected by Batten disease through family support, funding vital research, and advancing education and awareness of Batten disease in Australia.
	Lafora Initiative	Created by parents of children with Lafora disease to create awareness of this fatal rare disease.
	Leukodystrophy Australia	Leukodystrophy Australia supports many individuals and families, who may be at any stage of their journey with leukodystrophy, from awaiting confirmation of diagnosis, through dealing with the health and socio-emotional impact of the condition, to bereavement and beyond.
	Mito Foundation	Mito Foundation supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease.
	Australian MPS Society	The Australian MPS Society supports families by connecting them to other families and directing them to important sources of information. We also provide financial support to families through our Member Assistance Program—MAP.
	Rare Find Foundation	Rare Find Foundation exists to support those affected and their families, supporting research and raising awareness of Tay-Sachs and Sandhoff Diseases.
	Rett Australia	RSAA seeks to enhance the quality of life for persons with the syndrome and their families, and be of assistance to anyone interested in the disorder.
	Sanfilippo Children’s Foundation	Sanfilippo is a rare genetic condition that causes fatal brain damage. Sanfilippo Children’s Foundation's purpose is to drive research for a world without Sanfilippo Syndrome.
	Syndromes Without A Name (SWAN)	Syndromes Without A Name (SWAN) is a community of unique children and their families. We provide information, support and systemic advocacy for families caring for a child with an undiagnosed or rare genetic condition.