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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.


Charcot-Marie-Tooth Awareness Weekend

Written by AGSA Administrator on .


Venue: Building B26, Concord Medical Education Centre, entrance Gate 3, Hospital Rd., Concord Hospital, CONCORD NSW

Time: Saturday 11th: AGM and Mix and Mingle and Open Forum: 2pm to 5pm

Sunday 12th: Awareness Seminar: 9.00am to 3.30pm.

Topics include:
Professor Garth Nicholson – CMT Research
Professor Joshua Burns – CMT Management
Lyndal Douglas - Genetic Counselling
Dr Andrew Wines - CMT Surgery
Lois Tonkin – Principles of Pain Management
A Posture and Balance Workshop
CMTAA Research Grant
Interviews with people with CMT
Q and A session.

Cost: Saturday 11th: AGM followed by Mix and Mingle and Open Forum (including light refreshments): FREE

Cost: Sunday 12th: Awareness Day Seminar: $30 per person, $10 per child (under 18 years). $70 families(Mum, Dad and their immediate family children). This includes an attendee kit, morning tea, lunch and light refreshments.

Parking is conveniently available in the hospital car park opposite the entrance to the Concord Medical Education Centre. Concession parking cards will be available when registering to enable you to park all day for $5 which is payable when exiting the car park. Disabled parking is available in front of the Concord Medical Education Centre.

Please register your attendance through the Seminar RSVP link at the end of the Sydney Awareness Day Seminar article on the CMTAA website, by filling out the section below and sending back to the office address above or by emailing or phoning the National Office on 02 9767 5105 by October 4th 2014 together with your attendance fee. Alternatively, please call our National Office on 02- 9767 5105 to register your attendance and pay on the day.

A Certificate of Attendance for professional development will be available if required.

Sibs Camp 2014

Written by AGSA Administrator on .

CatholicCare Sibs Camp 2014

Do you have a brother or sister with a disability ?
Are you aged between 8 and 16 years old?
Are you up for having fun?

Join us for a great weekend away at Mowbray Park Farm Stay!

We will be canoeing, horse riding, whip cracking, cow milking, bush walking, sitting around the camp fire, making billy tea & damper, doing archery, playing tennis, feeding farm animals and having tractor rides.

When: Friday, 17 October—Sunday, 19 October 2014

Where: Mowbray Park Farm, 745 Barkers Lodge Road, Mowbray Park NSW 2571

Cost: $50 per child
(includes all activities, accommodation, meals, and transport)

CLICK HERE to download the Camp Enrolment Pack
CLICK HERE to download the Waiver Form
CLICK HERE to download the Packing List

Bookings are essential as places are limited.
Please contact Kath Walsh on (02) 4254 9332 or 0428 638 899
or This email address is being protected from spambots. You need JavaScript enabled to view it.

Research Project: Parent-carers' perspectives on their relationships with complex service systems

Written by AGSA Administrator on .

Are you a parent who cares for a child or children (including adult children) affected by a genetic condition that requires high-level care in order to meet their basic daily needs? If so, our research team from the Faculty of Education and Social Work, University of Sydney, would love to hear from you!

The study will explore the relationships that parents have with the many services they are in contact with as a result of their caring role (for example health, education, disability, finance, employment), to guide future policies that affect fathers and mothers who are caring for children with high-level additional care needs.

We understand that your time is precious. Taking part in the research will involve approximately 1-1.5 hours to meet with our researcher, Pam Joseph, to talk about your experiences and complete a 'map' of the services that you are in contact with. There will be an opportunity for you to provide additional information after this meeting if you wish to.

This study is open to parents located anywhere in Australia. We are keen to hear from fathers as well as mothers, and step-parents are also welcome to participate. Where more than one parent from a family participates, separate interviews will be held. Due to a potential conflict of interest for one of the researchers, families affected by leukodystrophy or leukoencephalopathy (a group of conditions affecting the white matter of the central nervous system) are not able to take part in this study.

If you know someone who might like to take part but who speaks a language other than English, translation and interpreters can be arranged.

For more information, including a Participant Information Sheet and consent forms, please contact Pam Joseph on 0435 532 074, or by email at This email address is being protected from spambots. You need JavaScript enabled to view it.

Family Planning NSW Forum for parents and carers of people with intellectual disability

Written by AGSA Administrator on .

sexuality nand relationships forum family planing nsw 2014

Family Planning NSW is excited to announce a forum for parents and carers of people with intellectual disability. Find out how to support your family member’s personal development and sexuality in a positive way.
• Experienced presenters to answer your questions
• Choose from six interactive workshops
• Meet other parents and carers
• Resource bag included
• Family Planning NSW bookshop open

Date: Saturday 6 September 2014

Time: 1.00pm - 5.00pm

Venue: Family Planning NSW
328-336 Liverpool Road
Ashfield NSW 2131

Cost: $50 per person

Includes afternoon tea

The forum will include presentations on:
• Disability and sexuality
• Preparing for puberty
• Relationships and dating
• Supporting positive and safe sexual expression
• Tips for talking about sex and answering tricky questions
• Sexual health
• Books, DVDs and resources

Attend two interactive workshops of your choice including:
• Dating and Intimate Relationships. Liz Dore, Relationships and Private Stuff
• Puberty and Boys. Matthew Parsons, Family Planning NSW
• Becoming a Wonderful Woman. Rosalie Power, Family Planning NSW
• Friendships and Relationships. Liz Dore, Relationships and Private Stuff
• Sex, Safe and Fun. Ee-Lin Chang, Family Planning NSW
• Sex Services for People with Disability. Saul Isbister, Touching Base Inc.
See our website for more information about the workshops

CLICK HERE TO REGISTER and for more information about speakers and workshops


Who should attend?
Parents, foster parents, relatives and other unpaid carers of people with disability are welcome. The forum will address sexuality issues across the lifespan including childhood, adolescence and adulthood.

This forum is not intended for service providers. Please see our website for information regarding professional education for disability workers.

We regret we are unable to provide respite/childcare.

Danielle Fehir
Health Promotion
T: 02 8752 4388
E: This email address is being protected from spambots. You need JavaScript enabled to view it.

About AGSA


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


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


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

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

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Upcoming Events

NORD Rare Diseases and Orphan Products Breakthrough Summit
Tuesday October 21, 8:00 AM - 3:00 PM
11th International VHL (Von Hippel-Lindau Syndrome) Symposium
Thursday October 23, 8:00 AM - 3:00 PM
5th Annual World Orphan Drug Congress
Wednesday November 12, 8:00 AM - 5:00 PM
International Williams Syndrome Conference, Budapest
Friday November 21, 8:00 AM - 3:00 PM

Contact Us

+61 2 9211 1462

+61 2 9211 8077

66 Albion Street, Surry Hills
NSW 2010 Australia


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