Frequently Asked Questions

The Association of Genetic Support of Australasia (AGSA) Inc., a tax-deductible registered charity, was formed in 1988 to provide support and information for individuals and families affected by a genetic condition.

What can AGSA do for me?
The diagnosis of a genetic condition in a family member, particularly a child, places enormous stress on a family. Families may feel the need for personal support offering a specialised understanding of their particular condition. Whilst there are suppogert groups established for a number of genetic disorders within the Australasian region, AGSA may provide the only contact point for families affected by rare conditions. AGSA will endeavour to facilitate contact with another family/individual affected by the same, or similar conditions, and/or provide information about an overseas support group. AGSA also provides: A Peer Support and Information Officer who deals with enquiries and facilitates ongoing support for individuals, families, health professionals and other interested groups.

• AGSA has a database of over 850 predominantly rare genetic conditions and has a Rare Treasures support group which has over 250 very rare chromosomal abnormalities
• Resources relating to education, respite care, medical services, allowances, and other helpful organisations
• Information seminars
• Local and regional contacts
• Regular newsletters

What genetic conditions do AGSA represent?
AGSA represents over 850 genetic conditions. A list of the conditions can be found here.

What is a genetic condition?
A gene or chromosome fault can result in a genetic condition. Genes are the instructions that determine physical characteristics such as height, hair and eye colour, strength of our bones and the correct functioning of our bodies. Genes are located on chromosomes inside the cells of our bodies. A genetic condition can run in families, but may occur without a previous family history.

Where can I go for help?
The Centre for Genetics Education has a list of services available here.

What funding is available?
Centrelink provides funding for carers and people living with genetic conditions. Visit their website for more details.

Is there a support group for my genetic condition?
Take a look at our list of support groups in our list of genetic conditions, or contact AGSA on 02 9211 1462.

How many families in Australasia are affected by a genetic condition?

• Currently it is estimated one person in ten will be adversely affected, directly or indirectly, by a genetic problem during their lifetime
• About half of all miscarriages are caused by chromosomal abnormalities

The completion of the full human genome sequence, in February 2001, refined the estimated number of genes in the human genome to around 30,000. Interestingly, the number of genes needed to make a human being is only double the number needed for apparently much simpler animals, such as fruit fly or a worm!

Around 22,000 genes have been identified to date. Almost 14,014 of these have been mapped to their chromosomal location and of these around 1,639 genes have been associated with human genetic disorders.

The list is increasing every year and includes such disabilities as blindness, cystic fibrosis, muscular dystrophy, haemophilia, breast cancer and problems with intellectual and physical development.

At present genetic testing is available in Australasia for approximately 300 disorders. Some tests are for genes involved in rare congenital disease of childhood. Some are for single gene disorders that manifest in the adult years.