Genetic Conditions
Support Organisations
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.
Australia
| AUSTRALIAN CAPITAL TERRITORY | Self Help Organisations United Together (SHOUT) |
Mail: PO Box 717, Mawson ACT 2607 Ph: 02 6290 1984 Fax: 02 6286 4475 E-mail:shout@cybermac.com.au Web:www.shout.org.au |
| NEW SOUTH WALES | The Association of Genetic Support of Australasia (AGSA) |
Mail: 66 Albion Street, Surry Hills NSW 2010 Ph: 02 9211 1462 Fax: 02 9211 8077 E-mail: info@agsa-geneticsupport.org.au |
| QUEENSLAND | Self Help Queensland Inc | Mail: PO Box 353, Sunny Bank QLD 4109 Ph: 07 3344 6919 Fax: 07 3344 6919 E-mail: selfhelp@gil.com.au |
| VICTORIA | Genetic Support Network Victoria (GSNV) |
Mail: 10th Floor, Royal Children's Hospital, Flemington Road, Parkville VIC 3052 Ph: 03 8341 6315 Fax: 03 8341 6390 E-mail: info@gsnv.org.au Web: www.gsnv.org.au |
| WESTERN AUSTRALIA | Genetic Support Council WA (GSCWA) |
Mail: Level 1, Oasis Lotteries House, 37 Hampden Road, Nedlands WA 6009 Ph: 08 9389 6722 Fax: 08 9389 9377 |
The Genetics Resource Book also contains listings of support groups in Australasia for almost 150 specific conditions.
International
| USA | The Genetic Alliance | Mail: 3401 Connecticut Avenue NW, Suite 404, Washington, DC 20008 - 2304 Ph: 202 966 2304 Fax: 202 966 8533 Email: info@geneticalliance.org |
| March of Dimes | Mail: National Headquarters 1275 Mamaroneck Avenue White Plains NY 10605 Ph: 888 663 4637 Web:www.modimes.org |
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| National Organisation for Rare Disorders | Web: www.rarediseases.org | |
| CANADA | Canadian Directory of Support Groups | Mail: Regional Medical Genetics Centre, Children's Hospital of Western Ontario, 800 Commissioner's Road East, London, Ontario. N6C 2V5 Ph: (519) 685-8453 or in Ontario only: 1-800-243-8416 Fax: (519) 685-8214 |
| NEW ZEALAND | Parent to Parent | Mail: National Office, PO Box 234 Waikato Mail Centre Ph: 07 8341108 or 07 8341153, Toll Free: 0508 236 236 Fax: 07 834 1108 |
| New Zealand Organisation for Rare Disorders (NZORD) | Mail: P. O. Box 38-538, Wellington Mail Centre Ph: 04 566 7707 Fax: 04 566 7717 Email: enquiries@nzord.org.nz Web: www.nzord.org.nz |
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| Contact a Family | Mail: 209-211 City Road, London EC1V 1JN Ph: 020 7608 8700, Helpline 0808 808 3555, Textphone 0808 808 3556 Fax: 020 7608 8701 Email: info@cafamily.org.uk Web: www.cafamily.org.uk |
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| UNITED KINGDOM | Making Contact | Web: www.makingcontact.org |
| Genetic Interest Group | Web: www.gig.org.uk |
Other useful international resources for finding support groups include:
- Orphanet, www.orpha.net, a website in several languages which includes a searchable database of European support groups for rare disorders.