What is
Childhood-onset Heart Disease (CoHD)?
Childhood-onset heart disease (CoHD) is the collective term for the spectrum of heart conditions that affect the heart’s ability to work efficiently.
Heart defects and conditions experienced from birth are known as Congenital Heart Diseases (CHD). Acquired Heart Disease refers to conditions that arise later in childhood, commonly as a result of infections or exposures.
Condition Types
Aortic Valve Disease
Atrial Septal Defect
Atrio-ventricular Septal Defect (AVSD)
Cardiomyopathy
Coarctation of the Aorta
Cyanotic Congenital disease
Hypoplastic Right Heart Syndrome (HRHS)
Hypoplastic Left Heart Syndrome (HlHS)
Mitral Valve Disease
Persistent Ductus Arteriosus (PDA)
Pulmonary Atresia
Pulmonary Valve Disease
Single Ventricle Pathology
Tetralogy of Fallot (ToF)
Pulmonary Stenosis
Transposition of the Great Arteries (TGA)
Ventricular Septal Defect (VSD)
What We Do
HeartKids is the only Australian charity dedicated to providing lifelong support, resources, and advocacy for the 250,000 people impacted by childhood-onset heart disease (CoHD). We provide connection and care informed by lived-experience to ensure no one faces this journey alone.
Our Support
CoHD is a lifelong journey, and so is HeartKids’ support. Our teams, many with lived experience, offer emotional and practical care, tailored to milestones like diagnosis, schooling, and adulthood, ensuring families and individuals receive expert guidance at every stage.
Our Impact
For over 40 years, HeartKids has provided much-needed quality services, support and solutions to more than 250,000 Australian children, teenagers and adults impacted by CoHD.
Our Resources
HeartKids provides trusted information and resources about CoHD. Our resource library is a one-stop-shop for all our CoHD resources, including fact sheets, podcasts, videos and more.
How You Can Help
Give to HeartKids
Your heartfelt gift will bring hope and transformation to over 80,000 Australians living with CoHD, and much-needed support to hundreds of families coping with the grief and loss of their child. Discover the ways to give and get involved today.
Community Fundraising
Find your passion and get involved in making a lasting difference in the lives of those impacted by CoHD. Discover our engaging community programs today.Â
Get Your Work Involved
Discover how to get your workplace involved in transforming the lives of those living with CoHD today.Â
Volunteer With Us
We greatly appreciate the gift of your time as we unite to support those living with CoHD. Explore the many ways you can volunteer with HeartKids. Â
Latest News and Stories
Resources for Aboriginal and Torres Strait Islander people
The HeartKids resource library is an ever-growing hub of factsheets, videos, podcast episodes and animations, all designed to help you better understand CoHD and its impacts. This week, for NAIDOC Week, we want to share some of our favourite resources developed for Aboriginal and Torres Strait Islander audiences. These resources have been designed to amplify […]...
New Animation: Gemma’s Bicillin Day
HeartKids is proud to launch Gemma’s Bicillin Day: What to expect when receiving treatment for RHD — a new animation designed to help young people feel more prepared and supported when receiving their Bicillin injections. The animation was developed in collaboration with Children’s Ground and in consultation with RHD nurses, alongside the HeartKids Action Plan team. The voice of Gemma is […]...
Reflections from HeartKids visit to Northern Rivers Aboriginal Communities
Angela Webb – Aboriginal & Torres Strait Islander Engagement Manager My name’s Angela Webb. I’m a proud Gumbaynggirr Yaegl woman from the mid north coast of New South Wales and I’m the Aboriginal and Torres Strait Islander Community Engagement Manager at HeartKids. Recently, I visited the Northern Rivers region of NSW—a place that has faced […]...
Media release: Heartbeat of Football and HeartKids Unite
Media release Monday 7 July 2025 Heartbeat of Football and HeartKids Unite to Support Australians Impacted by Childhood-onset Heart Disease and Lifelong Heart Disease HeartKids and Heartbeat of Football Foundation (HoF) have announced a new partnership to support Australians living with heart disease – particularly teens, adults and Aboriginal and Torres Strait Islander communities. HeartKids […]...
Media release: New National Partnership to Support Siblings of Children with CoHD
Media release Friday 23 May 2025 New National Partnership to Support Siblings of Children with CoHD HeartKids and Siblings Australia have entered into a new partnership to improve support for siblings of children impacted by childhood-onset heart disease (CoHD), with a particular focus on those experiencing grief following the loss of a sibling. Through a […]...
Heart Kid Theo from Trentham CliffsÂ
“HeartKids called me very soon after we found out, I hadn’t had Theo, I was still in Mildura. They walked me through what it would look like, down to things like what we should bring to the hospital, what to expect, and they were really supportive and gave me the best practical outlook on what […]...
HeartKids Urges Federal Action to Support CoHD Families
Heart parents Joeleen Nikoro and Taina Te Heke, faced significant challenges after their son, Dallas, was diagnosed in utero with hypoplastic right heart syndrome, a serious congenital heart defect. In pursuit of essential medical care for Dallas, they made the brave decision to move from regional New South Wales to Sydney. During this difficult journey, […]...
HeartKids Connect: A safe space for the Australian CoHD communityÂ
Have you joined HeartKids Connect yet? HeartKids Connect is a free, safe and secure online community specifically for Australians impacted by childhood-onset heart disease (CoHD). With more than 250,000 Australians impacted by CoHD, we know there is a significant need for connection, information sharing and peer support – and online spaces can help fill that […]...
Media Release:Â HeartKids ask Government to pledge funding for life-saving programs that support childhood-onset heart disease
Media Release April 8, 2025 In the lead into the federal election, HeartKids is asking the current Government and Opposition to pledge funding for four priority areas to reduce the impact of childhood-onset heart disease (CoHD) on 1,000,000 Australians. Four young lives are lost every week to childhood-onset heart disease, which places a significant burden […]...
Media Release: HeartKids Limited appoints a heart kid as new Chair
Media Release April 8, 2025 HeartKids Limited is pleased to announce the appointment of Rohan Geddes as its new Chair, following the decision of Elizabeth Foley to step down, having completed her term. Rohan brings a wealth of experience and a personal connection to HeartKids. He is a heart kid himself, having been born with […]...