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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
Genetic Information Seminars

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

GA organises information seminars that are general or for specific genetic conditions. This includes but is not limited to research opportunities, medical updates, support services available, symptom alleviation/treatment progress.

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 refreshments provided. There is no cost to attend.

It is also a chance for people to meet others in caring roles or 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 GA on 02 9295 8359 or email projects@geneticalliance.org.au

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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 support is provided through seminars which can include face to face counselling and sibling workshops – rural outreach program.

Genetic Alliance Australia runs a series of outreach seminars for carers of someone with a genetic condition. Sibling workshops can be included according to demand. 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.

Seminars can be extended to include social events such as evenings out for dinner that allow families and individuals to have a relaxing and fun time out socialising and meeting other people.

Counselling is also offered as part of the FTV project. Each rural seminar includes a volunteer Genetic Counsellor who can offer face to face counselling.

If you are interested in attending a seminar/workshop in your area please contact our Projects Manager on 02 9295 8314 or email projects@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 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 Genetic Alliance on (02) 9295 8359 or director@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 rural residents due to the limited availability of support services in their region.



People living with a rare disease require ongoing, specialist support from their carers. Rare diseases often 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. Without adequate support services in their local communities these carers are left to deal with often difficult circumstances on their own resulting in feelings of isolation.

Genetic Alliance offers a variety of options to support carers:

Seminars and workshops give carers and families of people with a rare disease the opportunity to network with other carers and find out more information about services that are available.

Condition-specific meetings can range from a few people chatting over morning tea through sharing lunch for a dozen people with a guest speaker to a full day conference with multiple presentations for a hundred or more guests.

There are remote options too: a group telephone call, Skype or Zoom conference which gives a measure of face-to-face connection, and this can be incorporated into a small gathering giving access to those who are unable to travel.

Offering carers an opportunity to meet others leads to increased resilience and widening support networks. By listening to the concerns of these carers and families we can identify appropriate solutions to help improve local support services and information.

Rare diseases affect more than one million people in Australia. With the help of Genetic Alliance you needn't feel so alone.

Please contact Genetic Alliance on 9295 8359 for further information. If you would like to organise a meeting for your condition please email the Projects manager on projects@geneticalliance.org.au



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To facilitate support for those affected directly or indirectly by genetic conditions throughout Australasia.

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