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Projects

Sharing solutions, improving life

Genetic Alliance Australia carries out a variety of projects focusing on issues that children, families and individuals with genetic disorders face.

Please see below the current projects that Genetic Alliance Australia is involved with. Coupled with these projects Genetic Alliance Australia is also involved as a patient partner in a wide range of research projects as well as being members of Steering Committees and Advisory Groups.

Our current projects
Face to Face Counselling

Genetic Alliance Australia provides face to face counselling at our offices in Darlinghurst.

Counselling is held at:

Genetic Alliance Australia
C/- Garvan Institute of Medical Research
Level 6, Room 6.39
384 Victoria Street
Darlinghurst NSW 2010 (walking distance from Kings Cross Station).

Clients are eligible for 6 – 10 one hour sessions at no cost. All sessions are strictly confidential.

Please phone Genetic Alliance on +61 2 9295 8359 for an appointment, or fill in the online request form.

Online request form

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Filling the Void

Filling the Void (FTV) is a project which aims to support people living in isolation who are caring for someone with a genetic condition. This includes support through telecounselling group, face to face counselling, seminars and sibling workshops – rural outreach program.

Genetic Alliance Australia runs a series of outreach seminars and sibling workshops for carers of someone with a genetic condition. The seminars provide an opportunity to access a variety of specialists relevant to the caring experience in a non clinical setting. It is also an excellent opportunity to meet other families who share a similar experience to your own.

Sibling workshops provide an opportunity for kids with brothers or sisters with a genetic condition to meet others who understand the positives and negatives involved in living with a brother or sister with a disability.

We also run other events such as evenings out for dinner or social events that allow families and individuals to have relaxing and fun time out socialising and meeting other people.

Counselling is also offered as part of the FTV project in the form of face to face counselling or as part of a telecounselling group.

If you are interested in attending a seminar/workshop in your area, or are seeking counselling, please contact our Projects Manager Jenny Rollo on 02 9295 8314 or email projects@geneticalliance.org.au

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Genetic Information Seminars

A range of seminars aiming to inform individuals and families about information, support services and the latest updates regarding particular conditions

GA organises information seminars for a number of genetic conditions. These seminars aim to provide information updates on that particular condition. This includes but is not limited to research opportunities, medical updates, support services available, symptom alleviation/treatment progresses.

Typically, presentations are provided by medical professionals, geneticists, genetic counsellors and support services. There are opportunities to ask questions and talk to the presenters during breaks. The seminars normally run for the whole day, with refreshers provided. There is no cost to attend.

It is also a chance for people to meet others with the same condition, to share stories and experiences, and to reduce the isolation.

The seminars are a chance for individuals, families and carers to ask questions from health professionals and service providers in a comfortable, non-non-threatening and non-medical environment.

If you are interested in GA holding a seminar for a particular condition, please contact Dianne on 02 9295 8359 or email info@geneticalliance.org.au

Read more   ↠


Telecounselling Group

Genetic Alliance Australia provides group counselling over the phone for carers of people with rare or genetic conditions

As part of the “Filling the Void” project, Genetic Alliance Australia runs a telecounselling group for carers of someone with a genetic condition. Telegroup counselling, through a common phone line, is essentially conference calling and provides an excellent way for carers to communicate when they are geographically, financially and / or socially isolated. The group consists of up to six parent/carers on the line and two facilitators, Jenny Rollo, Projects Manager and Dianne Petrie who is the Director of Genetic Alliance and has been involved in genetics and family support for over 25 years.

The calls will last for one hour, once per week for a series of six weeks. The time and start date for our next programme will be confirmed following discussions with carers as to a day that suits them best. Some of the topics parents have wanted to discuss in the past include: communication, accessing services, and schooling, grief & loss and sibling issues.

Telecounselling groups are held 2-3 times a year depending on interest. They can be carers of individuals with the same conditions, all mums, all dads, all grandparents, all siblings or a mix of everyone.

Please note: This service is available to residents of NSW on a landline only.

There is no charge for this service

Read more   ↠


BRCA1/2 Gene Faults Information Day for Patients and their Support People

An annual information event for those who would like to know more about their surgery/treatment options, and to network with other people with the gene faults

Information Day background
In 2001, Genetic Alliance Australia was approached by a number of people to set up a support group for people living with an inherited gene fault predisposing them to certain cancers. At the first meeting it was agreed that an annual information day was preferred. Consequently each year, in October, an information seminar has been held.

The information day is planned each year by Genetic Alliance Australia with a committee of genetic counsellors and consumers. Would you like to be part of the planning committee for next year? If so, please contact Genetic Alliance Australia on 02 9295 8359 or dianne@geneticalliance.org.au

What happens?
It is an information day with presentations from doctors, genetic counsellors and individuals. Conducted in an informal setting, the day gives people the opportunity to receive up to date information and the chance to share stories, to network and to ask questions.

Who attends?
Those who are at higher than population risk of the cancers associated with faults in the genes BRCA1 and BRCA2, their family and support people.

For further information please contact: Dianne Petrie at Genetic Alliance Australia on (02) 9295 8359 or
dianne@geneticalliance.org.au



Genetic Disorders Awareness Week

Genetic Awareness Week seeks to educate the public about the impact of genetic conditions on individuals and families

Genetic Disorders Awareness Week is held annually in the second week of September. The event aims to bring together patients, the public, health professionals, genetics experts and stakeholders in the genetics field, with a common goal to increase awareness for genetic conditions and rare diseases. The event showcases internationally renowned speakers and provides a platform to advocate for the many Australian patients and families dealing with a rare disease or genetic condition

If you are interested in attending or sponsoring this event, please contact Dianne Petrie on (02) 9295 8359 or dianne@geneticalliance.org.au


Williams Syndrome Picnic Day

Each year we hold a Picnic Day for the Williams Syndrome on behalf of the Williams Syndrome Association of Australia.

The Sausage Sizzle Picnic Day is held annually always on the last Sunday of August for the last 26 years on the grounds of the Mater Dei School, Kirkham Lane, Camden NSW for all Williams Syndrome individuals, families and friends.

Sausages, bread rolls, tea, coffee, milk, and wine are provided. However donations of a salad, a fruit platter and/or a cake are greatly appreciated.

Guests bring their own picnic chairs, eating utensils, plates, cups, a picnic rug, sunglasses, camera, hat and sunscreen. The kids often enjoy riding their bikes or playing ball.

If you are interested in attending please contact Dianne on 02 9295 8359 or email info@geneticalliance.org.au


Unmet Needs in the Rare Disease Community

Caring for someone with a rare disease can be intensely isolating and often results in financial and social disadvantage. This experience can be exacerbated for Hunter residents due to the limited availability of support services in the region.

nib foundation has partnered with the Genetic Alliance Australia (formerly known as Association of Genetic Support of Australasia) to help fund the Unmet Needs in the Rare Disease Community project that aims to provide greater support and information for carers of this unique group.

Genetic Alliance Australia’s Director, Dianne Petrie said that people living with a rare disease require ongoing, specialist support from their carers.

“Rare diseases require multiple specialist appointments, expensive equipment and regular respite services, which places a lot of pressure on those living with or caring for a person with a rare disease,” Mrs Petrie said.

“Without adequate support services in their local communities, these carers are left to deal with these often difficult circumstances on their own resulting in feelings of isolation.”

The project will see seminars and workshops conducted throughout the Hunter to give carers and families of people with a rare disease the opportunity to provide their thoughts on current services, network with other carers and find out more information about services that are available.

nib foundation Chairman, Mr Keith Lynch, said the project’s results will help shape the future provision of services and support in the Hunter.

“By listening to the concerns of these carers and families we can identify appropriate solutions to help improve local support services and information,” Mr Lynch.

“The project also offers these dedicated carers an opportunity to meet other local carers leading to increased resilience and support networks,” he added.

The project’s announcement coincided with International Rare Disease Day (Thursday 28 February 2013), which aims to raise awareness about rare diseases which affect more than one million people in Australia alone.

Please contact Dianne or Ayesha at Genetic Alliance on 9295 8359 for further information or to organise an interview to share your thoughts and experiences



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C/- Garvan Institute of Medical Research
Level 6, 384 Victoria Street
Darlinghurst ,  NSW   2010

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