Association of Genetic Support of Australasia (AGSA)
for those affected directly or indirectly by genetic conditions / rare diseases throughout Australasia.
We offer a range of support options such as seminars, sibling workshops, telegroup counselling and family days to facilitate contact with others. AGSA is recognised as a peak body in patient support and collaborates with similar organisations nationally and internationally, AGSA is currently the Acting President of the International Genetic Alliance representing 16 countries around the world.
We have a rare disease register representing over 1200 rare conditions to facilitate contact with others with the same or similar condition. We also have contact information for active support groups. If you would like further information, please phone us on: +61 2 9211-1462 or use our contact form here.
Young Carers Needed for
FESTofALL Media Interviews
Hey YC's!! The organisers of FESTofALL are looking for young carers to take part in media interviews in order to promote the festival and to promote who young carers are!!
Interested? If so email the YC TEAM at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . And remember if you are under 18 you will need parental permission.
Look forward to hearing from you soon!!
Evaluation of the attitudes towards
and use of Genetic Information Sheets
We would like to invite you to participate in a short survey to help the Centre for Genetics Education (CGE) evaluate the Genetic Information Sheet (GIS) that you received from the Association of Genetics Support of Australasia (AGSA). The survey should take about 5 – 10 minutes to complete.
The information sheet you received was written by CGE to provide information on causes, symptoms, inheritance, prevalence, treatments, testing and support groups for individuals and families with a rare genetic condition.
This survey is designed to explore the attitudes towards and the use of the information sheets for individuals and families with a rare genetic condition. The results of the survey are intended to inform the future direction and development of the information sheets and ensure that individuals and families are receiving an information sheet that suits their needs.
The survey can be completed online between July 18 and May 2 and does not require you to provide any personal information. The survey can be found at;
http://www.surveymonkey.com/s/P582BVT
Results of the evaluation will available on request and presented at the Human Genetics of Australasia conference July 22-25. If you have any questions, comments or concerns feel free to contact Associate Genetic Counsellor and Information Officer, Simon Troth on (02) 9462 9596 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it .
We thank you for taking this time to assist us and look forward to providing this resource to you in the future.
The Centre for Genetics Education
Free AGSA Newsletter
Usually only available for members, we are offering our newsletter free this month only. You can download the latest newsletter using the link below:
For more information on membership, click here or contact us on 02 9211 1462.
Ryde Area Supported Accomodation (RASAID) in the news
From Northern District Times:
"NORTHERN district parents who care for a disabled adult child popped champagne corks last week after seven years of riding a “rollercoaster of hope and despair”.
Ageing members of the Ryde Area Supported Accommodation for Intellectually Disabled (RASAID) were worried about who would look after their child once they died.
But now their wish for suitable supported accommodation for their children has been granted."
Full Story: http://northern-district-times.whereilive.com.au/news/story/welcome-home-funding/
Friendly to the Extreme:
Meet Kids and Adults With Williams Syndrome
From ABC News:
"Williams Syndrome is a rare genetic condition -- so rare, in fact, that few people have ever heard of it. Of about 7,500 newborns, only one will have it. But that one, should you ever meet him or her, will likely have a personality of unforgettable ebullience and warmth. It is the type of personality seen only occasionally beyond the world of Williams Syndrome."
Full Story: http://abcnews.go.com/Health/friendly-extreme-meet-kids-adults-williams-syndrome/story?id=13795416
Learn more about AGSA, Genetic Conditions, or make an enquiry:
66 Albion Street, Surry Hills
New South Wales, Australia, 2010
+ Click for Google Map
Telephone: +61 2 9211 1462 Fax: +61 2 9211 8077
Reg Charity No. CFN: 15481
ABN: 83 594 113 193
Funded by NSW Health
