Useful Links

Heart Disease

Heart Defects Simplified

Congenital Heart Surgeon’s Society Data Center

Heart Support

Genetic Syndromes

Genetic Alliance Australia  (formerly AGSA)

Centre for Genetics Education of NSW

Marfan Syndrome

Velo-cardio-facial syndrome (VCFS)

Brugada Syndrome


Sudden Arrhythmic Death Syndrome (SADS)

Sids and Kids is an organisation that offers grief/bereavement counselling to families who have experienced the sudden and unexpected death of a child up to six years of age; there are groups also in the Hunter and other states of Australia.

Compassionate Friends Australia offers friendship and support to parents and their families following the death of a child. They provide connections to other individuals and families who have had a similar experience in the death of a child. These services are offered across Australia with offices based in each state.

M.I.S.S. Foundation is an international resource and is a community of compassion and hope for grieving parents. It provides an online forum and links to articles offering further support and information.

Other contacts are:
Kids Help Line: 1800 55 1800
Lifeline: 131 114
Bereavement C.A.R.E. Centre: 1300 654 556

Heart Kids | Australia