Useful and Interesting Links
- Australian Genetics Support Australasia
- Better Health Channel
- Cardiomyopathy Association of Australia
- Congenital Heart Disease Resource Page
- Down Syndrome
- Genetics Education Program of NSW
- Heart Support – Australia
- Hospital for Sick Children in Toronto
- Hypoplastic Left Heart Syndrome
- Long QT Syndrome
- Marfan Syndrome
- Marfan NSW
- Pediheart General Info on C.H.D.
- Velo-Cardio-Facial/Di George Syndrome
Patient Associations
National Organisations
- Anticoagulation Europe
- Association for Children with Heart Disorders
- Association for Children with Heart Disorders, Scotland
- Cardiomyopathy Association
- Childrens Heart Federation
- Heart Line
- Little Hearts Matter
- Marfan Association UK
- Pulmonary Hypertension Association
- ANCC, Association Nationale des cardiaques congénitaux [France]
- Foreningen for Hjertesyke Barn [Norway]
- Jemah [Germany]
- Nederlandse Hartstichting [Netherlands]
- Adult Congenital Heart Association [US]
- Adults with Congenital Heart Conditions [New Zealand]
- Canadian Adult Congenital Heart Disease Network [Canada]
- CHARGE Syndrome Foundation, Inc. [US]
- Childrens Heart Society [Canada/North America]
- Heart Children New Zealand Inc. [New Zealand]
Sad Links
Sadly, sometimes heart children die.
Sometimes families and friend no matter how much they might wish to, can’t be the one you need to turn to. You may not have lost your child but maybe a friend has and you want to help but can’t quite find the place to start. The following are links to sites in both Australia and overseas that have been started to help families, both parents and siblings who have lost a child.
We wish that we did not have to add these links but are very grateful that we are able.
www.sidswa.org.au
Sids and Kids WA 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. Their Phone number is 08 9474 3544
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