Sydneysiders: Adjusting to your ICD

Learn about adjusting to life with an ICD at the next Royal North Shore Hospital ICD Group Meeting on Thurs 11 July. Having an ICD implanted can be a life-changing event that can affect you physically, socially and emotionally. Some people adjust quickly and easily to having an ICD, while for others it may take […]

Flu vaccine 2013: should heart patients get it?

As winter approaches, a common question many patients ask is “Should I have the flu vaccine this year?” Prof Chris Semsarian outlines what the flu vaccine is for Australia 2013 and who should get it? The Southern Hemisphere vaccine for the winter of year 2013 in Australia contains protection against 3 strains of influenza virus: • […]

Cardiac arrest & heart attack

People often think a heart attack and cardiac arrest are the same thing. Prof Chris Semsarian explains the difference Sudden cardiac arrest is one of Australia’s biggest causes of death and disability. It claims the lives of an estimated 22,000 to 33,000 Australians each year. But immediate CPR and defibrillation in the first few minutes […]

Q&A: family matters

What to do when at-risk family members are reluctant about getting screened by a cardiologist. Question: My children know I have a genetic heart disease but they still haven’t seen a cardiologist. Do you have any suggestions about how I can get them to see a doctor?  Answer: from associate genetic counsellor Laura Yeates Most […]

New: Brugada syndrome information sheet

We’ve added a Brugada syndrome information sheet to our genetic heart disease series. Brugada syndrome is a rhythm disorder of the heart that can cause the bottom chambers of the heart (known as the ventricles) to beat abnormally fast, which can lead to a person to feeling dizzy, fainting and it can sometimes result in […]

Kind-hearted support from the Mamma Lena & Dino Gustin Foundation

The Mamma Lena & Dino Gustin Foundation has generously awarded a grant to the Australian Genetic Heart Disease Registry to support our efforts in understanding genetic heart diseases. Throughout their lives, Mamma Lena and her husband Dino Gustin generously contributed to the Australian community to make a difference to people’s lives. From when they first […]

Joint funding supports Tasmanian branch

Generous funding from the Clifford Craig Medical Research Trust, Rotary Tasmania and some Lions Clubs will support the Tasmanian branch of the Australian Genetic Heart Disease Registry for the next four years. Clifford Craig Medical Research Trust supported the establishment of the Tasmanian branch in 2010 as part of an Honours research project, which was […]

New Registry coordinator at Melbourne’s RCH

Vanessa Connell from the Royal Children’s Hospital (RCH) in Melbourne has joined us as the RCH’s new Australian Genetic Heart Disease Registry Coordinator. Vanessa is excited about working on the Registry and working with RCH families to help improve our understanding and care of genetic heart disease in Australia. “While working with children and families […]

New Left Ventricular Noncompaction (LVNC) Information Sheet Online

Our LVNC information sheet is the latest addition to our genetic heart disease series for patients and families. The new information sheet provides key information on left ventricular noncompaction (LVNC), a genetic heart disease which is less well recognised compared to other cardiomyopathies. LVNC is a rare disease, caused by a gene fault affecting the […]

Genetic Testing: Saving Lives and Cost

Genetic testing is a valuable tool in identifying gene faults in family members who are at-risk of disease.  But a new study based on data from the Registry has found it can save costs as well as lives. Published in the prestigious Heart journal, the study found genetic testing of families with hypertrophic cardiomyopathy (HCM) […]