External Links
Medical Links
Australasian Society for Inborn Errors of Metabolism
ASIEM was founded in 1992 as a special interest group of HGSA bringing together, laboratory scientists, metabolic physicians, nurses and dietitians involved in the diagnosis and treatment of inborn errors of metabolism. The society has produced a number of dietary handbooks and has an active laboratory educational role through the distribution of rare samples to participating biochemical genetics laboratories.
Human Genetics Society of Australasia
The Human Genetics Society of Australasia was formed in 1977 to provide a forum for the various disciplines collected under the title of Human Genetics. The Society holds an Annual Scientific Meeting each year with visiting international and national speakers. All members of the Society are encouraged to present original work in the form of oral and poster presentations. The majority of members hold both a qualification and are employed in a position relevant to Human Genetics.
Professional Links
Genetic Support Network Victoria
The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. The Network is proud to be associated with a wide range of support groups throughout Victoria and Australia as well as peak professional bodies such as Victorian Clinical Genetics Services.
Health Direct
A Commonwealth Government of Australia website providing a very good overview of conditions, diseases, support groups, medical facilities and more. Very user friendly with an excellent search capacity.
Genetic Alliance Australia (formerly AGSA)
Genetic Alliance Australia (formerly AGSA ) is a peak umbrella group for rare genetic conditions/diseases, so rare they don’t have their own support group. GA Aus 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.
Rare Voices Australia
Rare Voices Australia (RVA) is a national, not-for-profit organisation established in 2012 with a vision to be ‘the unified voice for ALL Australians living with a rare disease’. RVA is Australia’s national alliance advocating for those who live with a rare disease. RVA provides a strong common voice to promote health policy and a healthcare system that works for those with rare diseases.
Support Groups
The PKU (Phenylketonuria) Association of NSW Inc
The Association is based in and around Sydney, NSW Australia but our members are in all states of Australia. Visit our website regularly to keep up with news and events as well as resources available to Australian families living with PKU.
Organic Acidemia Association (USA)
This is an American-based group and an excellent resource of information for anyone who has an Organic Acidemia (eg MMA, PA, GA, 3-MCC, IVA). This group also offers an excellent email list serv. Very helpful for those with rarer conditions who may need to contact others outside Australia to find families with disorders in common.
HCU Network Australia
HCU Network Australia is a Health Promotion Charity established in 2014, with the vision “to be a driving force in the journey to a cure, improving quality of life along the way”. Our aim is to achieve meaningful progress and best health outcomes for the HCU community.
MSUD Family Support Group (USA)
The MSUD Family Support Group is a non-profit organization for those with MSUD and their families and includes health-care professionals and others interested in MSUD. Parent interest in support and information prompted the first MSUD Symposium for families and professionals in 1982.