Useful Links

Heart Disease

Heart Defects Simplified

Congenital Heart Surgeon’s Society Data Center

Heart Support

Kawasaki Disease

Genetic Syndromes

Down Syndrome Society

Australian Genetics Support Australasia (AGSA)

Centre for Genetics Education of NSW

Marfan Syndrom

Marfan Syndrom NSW

Velo-cardio-facial syndrome (VCFS)


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.

M.I.S.S. Foundation in the USA was started by Joanne Cacciatore after the death of her daughter. There are lost of different areas on this site and it is the place of the well known kindness project. While checking this site over I found it a little sad, informative, complex and surprising to me, very uplifting. I have ‘spoken’ with Joanne via email and found her to be a very lovely woman who was pleased to be asked to be a link on our site.

The Compassionate Friends was founded in Coventry, England, in 1969, by Rev. Simon Stephens, Assistant to the Chaplain in the Coventry and Warwickshire Hospital. Simon noticed that the intensity and duration of parental grief was much greater than that of others who lost loved ones. He brought together two couples whose children had died at the same time, hoping they might comfort one another. It worked; each parent understood the pain the others were going through, and they were able to support and help one another as no one else could do. In time, the two couples reached out to other grieving parents, and The Compassionate Friends was founded. Compassionate Friends has Australian Offices.
For NSW: 4th Floor 32 York Street, Sydney (02) 9290 2355

Further telephone contacts are:
Kids Help Line: 1800 55 1800
Lifeline: 131 114
Bereavement C.A.R.E. Centre: (02) 9869 3330

South Australia