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    Support for those affected directly or indirectly by genetic conditions/rare diseases throughout Australasia

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    Support for those affected directly or indirectly by genetic conditions/rare diseases throughout Australasia

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    Support for those affected directly or indirectly by genetic conditions/rare diseases throughout Australasia

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    Making the right connections since 1988

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    Making the right connections since 1988

The Association of Genetic Support of Australasia facilitates support for those affected directly or indirectly by genetic conditions/rare diseases throughout Australasia.

AGSA helps supports familiesWe 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.

 

The Australian Rare Disease Survey

Written by AGSA Administrator on .

You are invited to participate in The Australian Rare Diseases Survey of Adults. This study is being conducted between 21 July and 1 September 2014, by the Office for Population Health Genomics, Department of Health WA in partnership with the Association of Genetic Support Australasia (AGSA), The Genetic Support Council WA (GSCWA), Genetic Support Network Victoria (GSNV) and Rare Voices Australia (RVA).

The purpose of this research study is to explore the healthcare experiences of adults living with a rare disease in Australia. This includes your experiences of:diagnosis, access to information, support and treatment; use of health services; patient registries, clinical trials and research.

We invite you to participate in the survey if you are:

•  Aged 18 years or older and living with a rare disease in Australia, or
•  A carer or paid support worker is permitted to complete the survey if the person aged 18 years or older living with a rare disease does not have the intellectual and/or physical capability to complete the survey

The responses you provide will be very helpful for us to obtain a comprehensive picture of the health care experiences of people living with rare diseases in Australia. It will provide important information that can be used toadvocate for rare diseases, plan for rare diseases at a state and national level and to develop evidence based government policy.

To participate in this study, please click on the link below to the online survey. The survey is anonymous and takes about 20-25 minutes to complete. We ask you to complete the survey by 5pm (AEST) on 1 September 2014.

Survey Link:
http://www.surveymonkey.com/s/AustralianRDsurvey

If you know someone else who might want to participate in the survey, please send to them the link to the online survey.

Thank you for participating in this study. All responses to the survey will be collated together. A report will be produced of the survey findings.  If you would like a copy of this report when it is published, or have any questions about the survey, please contact Caron Molster from the Office of Population Health Genomics, Department of Health WA on (08) 9222 6871 or This email address is being protected from spambots. You need JavaScript enabled to view it. .

My Choice Matters - Get More Skills Workshops, August 2014

Written by AGSA Administrator on .

                                                 mcm-logo

 

The My Choice Matters team will be visiting DUBBO, WAGGA WAGGA, YOUNG, ORANGE and BATHURST in August. They’re hoping to catch up, talk and see how they can be of use to you. These Get More Skills Workshops will focus on:

  • Changes that will be happening to the disability support system
  • What the changes will mean to you
  • Talk about planning and what to consider
  • Look at examples of what people are doing already

My Choice Matters is workshops, grants, projects, leadership programs & more for people with disability and their families in NSW. REGISTRATION IS ESSENTIAL, please contact the My Choice Matters team to find out extact venue locations and any other information.

Dubbo
When: Tuesday 12th August, 2014
Time: 10am - 2pm
View flyer HERE

Wagga Wagga
When: Thursday 14th August, 2014
Time: 10am - 2pm 
View flyer HERE

Young
When: Friday 15th August, 2014
Time: 10am - 2pm 
View flyer HERE

Orange
When: Monday 18th August, 2014
Time: 10am - 2pm
View flyer HERE

Bathurst
When: Tuesday 19th of August, 2014
Time: 10am - 2pm
View flyer HERE

The team will also bring information about how you can get involved in:

Becoming a Leader – A training course designed for people with disability and family members to develop their skills to become a leader in their own life and/or in their communities.

Running Projects – This program offers people with disability and their family members the chance to apply for a grant of up to $5,000 to co-run a project with My Choice Matters.

These projects are a way for people with disability to explore their interests, learn new skills and experiment with new ways of doing things.

Register here: http://www.mychoicematters.org.au/what-s-on-2/registration-form 


Please contact the My Choice Matters Team if you've got any questions
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone: 1800 144 653 or (02) 9211 2605

If you've already registered - please share with others.

Down Syndrome NSW Trivia Night 2014

Written by AGSA Administrator on .

Down Syndrome NSW would like to invite you to their upcoming community event. Join them for a Trivia Night for your chance to win great prizes and support Down Syndrome NSW. It’s also a great chance to meet the DS NSW family and extended network. Friends and family are welcome. There will be finger food and drinks available for purchase.

There will be games, raffles and silent auctions so don’t forget some extra money for your chance to walk away with a great prize!

Where: Five Dock RSL, 66 Great North Rd Five Dock.

When: 24th July 2014

Time: 6:30pm for 7pm start

Cost: $30 pp or table of ten, $250

Tickets: http://secure.downsyndromensw.org.au/events or 02 9841 4444

dsnsw

Challenging Behaviours Workshops

Written by AGSA Administrator on .

Dr Steven Walker (Breif Therapy Solutions) in partnership with Community Links Wollondilly are conducting their Challenging Behaviours Workshops again, to families of children/adolescents with seriously challenging behaviours.

The workshops commence on 17/7/14 at Smeaton Grange (near Narellan) from 10am-12 midday for eight consecutive weeks until 4/9/14.

These workshops have been generously funded by Camden Council and are free of charge to families.

These workshops are not for services or workers.

Contact Carmel Flavell (Community Links Wollondilly) for more information

E: This email address is being protected from spambots. You need JavaScript enabled to view it.

challenge behaviour

About AGSA

agsa-about-us

AGSA will endeavour to facilitate contact with another family/individual affected by the same, or similar condition, and/or provide information about an overseas support group.

AGSA has been Making the Right Connections since 1988.

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Genetic Conditions

agsa-genetic-conditions

We have contact and support group details for hundreds of genetic conditions in our database.

If you cannot find your condition here, or you would like to add a support group to the list, please contact AGSA directly. If you know of a change of contact details for a support group listed here, please contact AGSA so that we can update the website.

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Contact Us

agsa-contact-us

If you have any questions regarding genetic conditions or support groups, please do not hesitate to contact our office at the following address:

66 Albion Street
Surry Hills NSW 2010
Australia

You can also contact us by filling out our online form located here.

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Upcoming Events

Human Genetics Society of Australasia 28th Annual Scientific Meeting
Sunday August 3, 8:00 AM - 3:00 PM
Challenging Behaviours Workshops
Thursday August 7, 10:00 AM - 12:00 PM
Family Camp at Harrietville - Williams Syndrome Family Support Group (Victoria)
Friday August 8, 8:00 AM - 3:00 PM
Annual Williams Syndrome Picnic Day
Sunday August 31, 10:30 AM - 5:00 PM
Genetic Awareness Week Launch
Wednesday September 10, 6:00 PM - 10:00 PM

Contact Us

Phone:
+61 2 9211 1462

Fax:
+61 2 9211 8077

Address:
66 Albion Street, Surry Hills
NSW 2010 Australia

Email:
info@agsa-geneticsupport.org.au

Contact Form

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