change text size:
You are here: Home › Information › › Support Organisations

Support Organisations

Support for those affected by genetic conditions | Australia | International

 

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.

Back To Top

Australia

AUSTRALIAN CAPITAL TERRITORY Self Help Organisations United Together
(SHOUT

PO Box 717,
Mawson ACT 2607
Ph: 02 6290 1984
Fax: 02 6286 4475
E:shout@cybermac.com.au
W:www.shout.org.au
NEW SOUTH WALES The Association of Genetic Support of Australasia
(AGSA)

66 Albion Street,
Surry Hills NSW 2010
Ph: 02 9211 1462
Fax: 02 9211 8077
E:info@agsa-geneticsupport.org.au
W:www.agsa-geneticsupport.org.au
QUEENSLAND Self Help Queensland Inc

PO Box 353,
Sunny Bank QLD 4109
Ph: 07 3344 6919
Fax: 07 3344 6919
E:selfhelp@gil.com.au
W:www.selfhelpqld.org.au
VICTORIA Genetic Support Network Victoria
(GSNV)

10th Floor, Royal Children's Hospital,
Flemington Rd, Parkville Vic 3053
Ph: 03 8341 6315
Fax: 03 8341 6390
E:info@gsnv.org.au
W:www.gsnv.org.au
WESTERN AUSTRALIA Genetic Support Council WA
(GSCWA)

Level 1, Oasis Lotteries House,
37 Hampden Road,
Nedlands WA 6009
Ph: 08 9389 6722
Fax: 08 9389 9377
E:info@geneticsupportcouncil.org.au
W:www.geneticsupportcouncil.org.au

The Australasian Genetics Resource Book also contains listings of support groups in Australasia for almost 150 specific conditions.

Back To Top

International

USA The Genetic Alliance

3401 Connecticut Avenue NW,
Suite 404, Washington, DC 20008 - 2304
Ph: 202 966 2304
Fax: 202 966 8533
Email: info@geneticalliance.org
Web: www.geneticalliance.org
March of Dimes

National Headquarters
1275 Mamaroneck Avenue
White Plains NY 10605
Ph: 888 663 4637
Web:www.modimes.org
National Organisation for Rare Disorders

 W:www.rarediseases.org
CANADA Canadian Directory of Support Groups

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
W:www.lhsc.on.ca/programs/medgenet
NEW ZEALAND Parent to Parent

National Office, PO Box 234
Waikato Mail Centre
Ph: 07 8341108 or 07 8341153,
Toll Free: 0508 236 236
Fax: 07 834 1108
E:p2pnational@compuserve.com
W:www.parent2parent.org.nz
New Zealand Organisation for Rare Disorders (NZORD)

P. O. Box 38-538,
Wellington Mail Centre
Ph: 04 566 7707
Fax: 04 566 7717
E:enquiries@nzord.org.nz
W:www.nzord.org.nz
UNITED KINGDOM Contact a Family

209-211 City Road,
London EC1V 1JN  United Kingdom
Ph: 020 7608 8700, Helpline 0808 808 3555,
Textphone 0808 808 3556
Fax: 020 7608 8701
E:info@cafamily.org.uk
W:www.cafamily.org.uk

Making Contact
 W:www.makingcontact.org
Genetic Interest Group W: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 conditions.
Back To Top
Last updated: Oct 09, 2012