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Genetic Support Groups

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Support Groups can provide affected individuals and families with information about the condition and community resources, as well as an understanding and empathic ear. There are hundreds of genetic conditions represented by support groups in Australasia and internationally.
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The support group list established on the Centre's website has been determined, based on the information (regarding specific conditions) requested from us over the past five years and those that have been published in The Australasian Genetics Resource Book (8th ed. 2007).

When establishing the list, we prioritised contacts for those genetic condition support groups that were:

-      based in NSW
-      had a national office as well as or in lieu of a NSW branch
-      the only group for the condition available in Australia, regardless of location.

If you cannot find a support group relevant to your enquiry the Genetic Alliance Australia (formerly known as Association of Genetic Support of Australasia) is a not for profit organisation that can also help. Genetic Alliance Australia have a registry of contacts and will ensure that you have someone to talk to or a place to go to make your journey a little easier.

There are other genetic support organisations in some Australian states. They are supported by the Genetic and Rare Disease Network and are listed below:

ACT Self-Help Organisations United Together (SHOUT)

Genetic and Rare Disease Network (GaRDN) - Western Australia

Genetic Support Network Victoria (GSNV)

New Zealand Organisation for Rare Disorders (NZORD)

It is the Centre's policy to review the support group list annually and consider new support groups to be listed. If you would like to put forward a support group for inclusion or you see something that needs to be updated in the Centre's website list, please contact the Centre .

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If you cannot find a support group for a particular genetic condition, please contact the Genetic Alliance Australia.

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Last updated: May 15, 2015