Launched: National CHD Registry
"Help Hearts Like Yours"Now
Australia’s first Congenital Heart Disease Registry launched on Friday 15th September at Royal Prince Alfred Hospital (RPA), Sydney. This joint initiative is led by CHAANZ (Congenital Heart Alliance of Australia and New Zealand) and funded by HeartKids with the support of The Kinghorn Foundation, Pinnacle Charitable Foundation and Tata Consultancy Services.
Thanks to medical advances, there are now more adults living with congenital heart disease than children. The burden of the disease is an increasingly complex issue and the medical industry does not yet fully understand how to support this growing adult population, nor does it understand exactly how many of these adults exist.
“The National Congenital Heart Disease Survey is a vital part of understanding the burden of the disease in adults living with congenital heart disease” said Professor David Celermajer, Director of Adult Congenital Heart Disease and Pulmonary Hypertension Services at RPA and Chairman of CHAANZ.
Mark Brooke, CEO of HeartKids said “HeartKids and CHAANZ launched the Help Hearts Like Yours campaign to appeal to anyone born with a heart problem in Australia, and those that care for them, to take part in the national online survey and become part of the registry.
“Understanding the needs of the congenital heart disease community means we can advocate for government change and deliver treatment programs that support people throughout their entire life, and ultimately improve life outcomes. Please, join the movement, and take part in the survey” Mr Brooke said.
Click here to participate in this crucial survey to “Help Hearts Like Yours”.