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Heart of the matter: Issue #2

Issue #2: September Issue


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Heart of the Matter

eNews Issue #2

Welcome to the latest edition of HeartKids Heart of the Matter! We aim to share the latest news and information of relevance to all of our HeartKids and Heart Angel families and supporters. As part of our commitment to keeping you informed you will also continue to receive regular updates from your local HeartKids office, to notify you of events and local news in your state.

HeartKids is driving some truly exciting developments for our community, which have come to fruition in recent weeks. September has already brought ground-breaking achievements of which we at HeartKids are extremely proud, and which pave the way for a brighter future for all Australians impacted by congenital/childhood heart disease.

National CHD Roundtable

Leads to government action

On Tuesday 5th September, HeartKids conducted our inaugural National Childhood Heart Disease Roundtable at Parliament House.Over fifty participants came together from all across Australia including young people, adults and family members impacted by congenital/childhood heart disease (CHD); those that have lost a child; leading hospital, health and community stakeholders and policy makers; globally recognised CHD researchers, paediatric and adult Cardiologists representing every major CHD hospital in Australia and representatives from various Government Departments.

The aim of the Roundtable was to identify gaps and prioritise needs for support and service delivery for all Australians impacted by CHD, whilst raising awareness amongst the Department.

The Roundtable was an unprecedented success. The Honourable Greg Hunt, Minister for Health and Minister for Sport announced funding of a National CHD Action Plan, to be developed in conjunction with HeartKids. This is an enormous step towards improved treatment and services for people impacted by congenital and acquired heart disease. HeartKids is now working with the Minister to formalise the detail and next steps.

In particular HeartKids would like to thank The Honourable Steven Ciobo, Minister for Trade, Tourism and Investment (heart kid parent); Jaden Dixon (young adult heart kid) and Craig and Sarah Nicholls (Heart Angel parents) for sharing their own experiences with CHD so openly and bravely. We are grateful for your contribution to this important milestone for the HeartKids community.


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”.



NEW National Website

The HeartKids team has been excitedly working on our new national website for many months. Since becoming a truly national charity the website is becoming one of our most important ways to connect, inform and guide those affected by congenital/childhood heart disease.It is essential for us to create a bigger presence online and reach as many people affected as possible.

The new website reflects the HeartKids Strategic Plan and our commitment to providing a more user-friendly information portal to assist you when you need it most.

It is also aimed at raising awareness and providing information to the wider community.Whilst HeartKids is known to those impacted directly by congenital/childhood heart disease, very few in the community know of, and understand the physical, emotional, social and financial burden caused by congenital/childhood heart disease.

The website and our other online platforms are an opportunity for us to improve the visibility of the impact of CHD and the critical importance of community support to ensure we can support those affected.

The website will continue to expand beyond this initial launch phase and we look forward to providing further updates soon!



Grief Counselling

Your Contact Details

Heart of the Matter

National CHD Roundtable

Launched: National CHD Registry

NEW National Website


Our Website

Donate Now

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Supporting heart kids through life.


Prof David Celermajer speaks at the National CHD Roundtable

Gabriella Hetenyi, adult with CHD, completes the online survey

The new Help Hearts Like Yours national online survey campaign
Click here to participate in the survey.


Grief Counselling

Support for Heart Angel Families

The HeartKids Support Team offers free grief counselling to all family members of our Heart Angels. We work in partnership with hospital Social Work staff and health professionals to assist bereaved families by referring to other grief and loss services and programs. We can connect siblings with specialist assistance via the HeadSpace Programs and/or work with a family's General Practitioner (GP) to develop a Mental Health Plan.

A member of our Support Team can meet with you face-to-face at our offices in Adelaide, Brisbane, Melbourne, Perth or Sydney. In some instances we have trained Peer Support Volunteers working in regional communities.

Visit more information or call the HeartKids Helpline on 1800 432 785. If you'd rather connect with us by email, we’ll get back to you in less than two working days.

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