Projects

From 2022, the Genetic Awareness Week has been renamed the Genetic Alliance Australia Annual Forum.

The Annual Forum is held each year in September. The event aims to bring together patients, the public, health professionals, researchers, Master of Genetic Counselling students, genetics experts, stakeholders and those with lived experience. This event is inclusive of all those in the genetics field with a common goal to increase awareness for genetic conditions and rare diseases.

The event showcases 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

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