Other organisations that may be able to provide support or information on cardiomyopathy are listed below.
The Heart Foundation is an independent Australia-wide, non-profit health organisation, funded almost entirely by donations. The Foundation's purpose is to improve the heart health of Australians and to reduce disability and death from heart and blood vessel disease.
This group was formed in 1990 by a group of parents who have children with heart problems. The group offers non-medical support and understanding to other families who have had a child diagnosed with a congenital or acquired heart defect.
The Agnes Ginges Centre for Molecular Cardiology at the Centenary Institute, Sydney, carries out important research on genetic heart disease with particular focus on gene discovery in familial cardiomyopathies and sudden cardiac death.
The NGHD Registry aims to enrol every family in Australia with an inherited cardiomyopathy (e.g. hypertrophic cardiomyopathy) and inherited electrical disorders (e.g. long QT syndrome). The website includes information sheets on each of the diseases, details and genetic testing availability and links to new research programs
hearts4heart is a health promotion charity who provide targeted educational programs, resources and services to assist patients, medical professionals, policy makers and the public to ensure early diagnoses and treatment of heart disease including arrhythmias.
Heart Research Australia supports world-class and emerging researchers to conduct ground-breaking research into the prevention, diagnosis and treatment of heart disease.
The UK Cardiomyopathy Association is a registered charity which exists to help sufferers and medical professionals find ways to deal with a condition which, when identified, can be monitored and, if required, treated with medication. Their website contains a lot of information on cardiomyopathy.
Sutherland Heart and Lung Team (SHALT)
Sutherland Heart and Lung Team (SHALT) is a community based team located in Southcare Sutherland Hospital. The team consists of and Clinical Nurse Specialist and an Accredited Exercise Physiologist. SHALT provides a specialised service for individuals with Chronic Heart Failure, Heart Disease, Atrial Fibrillation, Cardiomyopathy and various Chronic Lung Diseases. The program involves home visits (for residents of the shire) and an exercise and education program. The aim of the program is to enable individuals to manage their condition overall improving their quality of life. If you are interested in this program and would like to know further information please don't hesitate to contact them on 9540 7046.