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There are many organisations in the community that have been established to provide support to families caring for children with a genetic disorder. We’ve provided an overview of a few support and information services below.

The Association of Genetic Support of Australasia


The Association of Genetic Support of Australasia facilitates support for those affected directly or indirectly by genetic conditions throughout Australasia. It is a network of people who themselves are affected by genetic conditions, either directly or indirectly. Their job is to make sure that you have someone to talk to and make your journey a little easier.

The Genetic Support Council of Western Australia


The Genetic Support Council of Western Australia is the peak body for Genetic Support groups in WA and their primary aim is to help the support groups deliver quality support and services to individuals and families affected by genetic conditions.

Centre for Genetics Education


The Centre for Genetics Education in Sydney, is dedicated to providing current and relevant genetics information to individuals and family members affected by genetic conditions and the professionals who work with them.

Based at Royal North Shore Hospital in Sydney, the Centre’s research and educational activities aim to bring genetics information to the widest audience possible.



The e-Bility website offers easy access to a wide range of information, resources, services and products of interest to people with disability, their families and carers, health professionals and service providers in the disability sector.

National Organisation for Rare Disorders (NORD)


NORD’s fundamental mission is to improve the lives of all people affected by rare diseases through education, advocacy, research, and patient services.

Genetic Support Network of Victoria


The Genetic Support Network of Victoria aims to facilitate an information, support and advocacy network that empowers people to identify and / or overcome genetic challenges.

Association for Children with a Disability


An information, support and advocacy organisation for children with a disability and their families, in Victoria.
The organisation is run by parents of children with a disability, covering all types of disability and are a non-profit organisation.