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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.

 

Navigating the Information Maze - Free Workshop at the Westmead Children's Hospital

Written by AGSA Administrator on .

NAVIGATING THE INFORMATION MAZE

Do you have a young child with a disability or developmental delay? Are you struggling to find your way through the medical, therapeutic and support systems?

This workshop, presented by STaR Organisation, will help you find your way through! We will look at;
♦ How you find out about services,
♦ How you use the service system,
♦ Creating your own resource file to collect, maintain and update information.

WHEN: 15th May 2014, 6.30pm-8.30pm.
WHERE: The Parent and Carer Resource Centre, Level 2, The Children’s Hospital at Westmead.
WHO: Parents and carers of young children (0-7) with a disability or developmental delay.

Registrations close Monday 12th May 2014. To register;
♦ Complete the attached form (Click HERE for link), or
♦ call the Carer Support Program on 9845 3590, or
♦ drop in to the Parent and Carer Resource Centre at the Children’s Hospital at Westmead.

Light refreshments provided.
This evening is provided free of charge.

 

Inclusive Employment - Youth with intellectual disability and the open labour market

Written by AGSA Administrator on .

National Council on Intellectual Disability (NCID) and NSW Council for Intellectual Disability (NSW CID) invite you to a FORUM ON INCLUSIVE EMPLOYMENT OF YOUTH WITH INTELLECTUAL DISABILITY AND THE OPEN LABOUR MARKET

The forum will be an opportunity for East and South East Sydney to
~ hear from families about their experiences with the current employment support system
~ hear from local service providers about best practice for getting people into employment
~ hear what information there is to help people with intellectual disability and their families choose support
~ participate in discussions on what governments must do to get more people intojobs

Why is this forum needed?
● Only 10% of people with intellectual disability are employed in the open labour market
● While the best service provider gets 87 people a job out of every 100; the average for all service providers is
that only 30 people with intellectual disability get a job out of every 100, ie, 70 people do not get a job
● The Productivity Commission was right when it said that the disability service system is ‘broken’
● The system is not being ‘fixed’ by governments or service providers - it is up to people with intellectual
disability, their families and allies within the community to make a difference

Venue: Prince Henry Centre, 2 Coast Hospital Rd, Little Bay NSW
Date: Tuesday April 29, 2014,
Time: 3.30pm - 7.00pm
Cost: FREE
General Inquiries: Paul Cain 0419 462 928, This email address is being protected from spambots. You need JavaScript enabled to view it.

RSVP essential by 22 April 2014
Telephone: Guna Adens 02 6296 4400 Online: Inclusive Employment registration form
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Thalassaemia Gala Dinner 2014

Written by AGSA Administrator on .

The Thalassaemia Society of NSW would like to invite you to attend the Thalassaemia Gala Dinner on Saturday 10th May at Novella Events, West Bonnyrigg. Celebrating 36 years of great service by the Society and a tribute to our past and present patients...

When: Saturday May 10th, 2014, 6:30PM Sharp | Formal Dress

Where: Novella Events, 682 Cabramatta Road, West Bonnyrigg

Tickets: $100.00 per adults / $40.00 per child

Contact : The Thalassaemia Society of NSW - www.thalnsw.org.au
Email - This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone - 0400 116 393

Please RSVP by 11TH APRIL, 2014

The 9th Biennial International 22q11.2 Deletion Syndrome Meeting

Written by AGSA Administrator on .

It is with great pleasure that we invite you to attend the 9th biennial International 22q11.2 Deletion Syndrome conference to be held in Palma de Mallorca, Balearic Islands, Spain, from Thursday June 19th to Sunday June 22nd.

The first two days Thursday 19th and Friday 20th will be devoted to the International Professional Program that will include a wide range of topics; from research findings and clinical care to educational and behavioral strategies. The venue is the Meeting Center of the Hotel Palas Atenea, located on the Paseo Marítimo of Palma, the seaside main boulevard of the city with an enormous choice of cafes and restaurants, and magnificent views to the Mediterranean.

The next two days, Saturday 21st and Sunday 22nd, will the devoted to the International Family Program that will include scientific sessions and short courses given by international experts, as well as workshops addressing the needs of children, teenagers and adults with 22q11.2 deletion syndrome and their families. In addition, there will be plenty of fun activities that will take place in the wonderful venue of the Palma Aquarium Meeting Center at Palma Beach. It will be a great opportunity to the families to meet and get to know each other.

Whether you are involved in research in any aspect related to the 22q11.2 DS syndrome, or a clinician or an educator interested in keeping abreast of the latest developments in the field, or part of a family with an affected member, this is the meeting for you! We want to create the environment and the atmosphere to promote interaction and synergies amongst us and generate fruitful collaborations. We want this to be a meeting that both specialists and patients will enjoy.

For more information visit http://www.22q11mallorca.com/

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

NSW Public School Starts Term 2
Monday April 28 - All Day
Thalassaemia Gala Dinner 2014
Saturday May 10, 6:30 PM -
The 9th Biennial International 22q11.2 Deletion Syndrome Conference
Thursday June 19, 8:00 AM - 3:00 PM
NSW Public School Starts Term 3
Friday June 27 - All Day
Ehlers-Danlos Syndrome and related disorders Conference 2014
Friday July 18, 9:00 AM - 12:00 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

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