Centre for Genetics Education
The Centre for Genetics Education 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.
Association of Genetic Support Australasia
AGSA is a network of people who are affected by genetic conditions, either directly or indirectly. Our job here is to make sure that you have someone to talk to, and you have other places and people we can put you in contact with to make your journey a little easier.
We have built up a contact register with over 850 genetic conditions plus 250 rare chromosome abnormalities and details of support groups, and we are meeting new people every week who are starting their own new connections.
The Association of Genetic Support Groups of Australasia (AGSA) Inc
The Australasian Genetic Alliance
There are more than 1000 genetic support groups in Australasia able to provide support and information to individuals and families living with a genetic condition. A support group can offer the opportunity to reduce isolation, share experiences, practical suggestions and ways of coping.
- The Australasian Genetic Alliance (AGA) facilitates networking between these groups, health professionals and patients and families to improve community and professionals knowledge of genetic conditions, their impact and available services.
- The Alliance has taken a lead advocacy role in representing members interests in national genetics issues.
- The AGA provides written and verbal submissions to government and others in the field of genetics and participates with like bodies nationally to further represent genetic support groups and their members.
The Australasian Genetic Alliance
The Genetic Support Council Western Australia
The peak body for genetic support groups in WA. Primary aim is to help them deliver quality support and services to individuals and families affected by genetic conditions
The Genetic Support Council WA
Was set up in September 2000, following a conference of over 30 rare disease support groups.
New Zealand Organisation for Rare Disorders NZORD
Now has a network of 147 support groups. Helps people affected by rare disorders and their families to find essential information. Provides resources and information for rare disease support groups.Monitors rare disease issues and policy matters. Builds partnerships between patients/families, support groups, clinicians, researchers, policy-makers and industry.
The New Zealand Organisation for Rare Disorders
The Genetic Support Network of Victoria
Set up to meet the needs of our members and the wider community affected by genetic conditions.
The Genetic Support Network of Victoria
Self Help Organisations United Together (SHOUT)
was established in 1981, during the International Year of the Disabled. SHOUT Inc brings together Self-help Groups who are made up of people who share the same problem, concern or life experience
