- Support for those affected by genetic conditions | Australia | International
- Orphanet, www.orpha.net, a website in several languages which includes a searchable database of European support groups for rare conditions.
Support for those affected by genetic conditions
Genetic support groups can be a useful resource for individuals affected by a genetic condition and/or their family. Sharing information, support and raising awareness of genetic conditions are an important part of what these groups undertake. In Australasia, there are hundreds of such groups each focussing on a specific genetic condition.
To find out whether there is a local genetic support group for a specific condition, contact the relevant group below. These groups may also be able to provide information and support for conditions so rare that there is no specific support group.
|AUSTRALIAN CAPITAL TERRITORY||Self Help Organisations United Together
|NEW SOUTH WALES||The Association of Genetic Support of Australasia
|QUEENSLAND||Self Help Queensland Inc|
|VICTORIA||Genetic Support Network Victoria
|WESTERN AUSTRALIA||Genetic Support Council WA
The Australasian Genetics Resource Book also contains listings of support groups in Australasia for almost 150 specific conditions.
|USA||The Genetic Alliance|
|March of Dimes||
|National Organisation for Rare Disorders
Genetics Home Reference
U.S. National Library of Medicine
|CANADA||Canadian Directory of Support Groups||
Regional Medical Genetics Centre,
|NEW ZEALAND||Parent to Parent|
|New Zealand Organisation for Rare Disorders (NZORD)|
|UNITED KINGDOM||Contact a Family|
|Genetic Interest Group||W:www.gig.org.uk
Other useful international resources for finding support groups include: