About Us

Our Impact

At HeartKids, our mission is to make a lasting impact on the over 80,000 lives of children and families impacted by Childhood-onset Heart Disease. With unwavering dedication and community support for over 40 years, we’ve proudly been able to achieve huge meaningful milestones providing for-life support.

Our Support

As the only national not-for-profit organisation solely focused on supporting and advocating for all people impacted by Childhood-onset Heart Disease (CoHD), we’re able to provide over 7000 support occasions annually, both in hospital and in the community, across regional, remote and metropolitan Australia. Providing guidance, education, mental health support, practical assistance, referral services and community connection, HeartKids services provide for-life support for those impacted by CoHD at every stage of their journey, and their families.

With your help we have committed $4m to date towards helping the world’s best minds research the causes, treatments and management of CoHD.


Instances of support given to families impacted by CoHD in 2023


HeartKids, provides practical and emotional support for parents, carers and families in hospital and in the community.


Helpline requests for support in 2023


The HeartKids Helpline offers support and guidance to those impacted by Childhood-onset Heart Disease, including families, caregivers, health professionals, and anyone seeking information or referrals.


Face to face support services in 2023

Face to face

HeartKids have support staff located in hospitals across Australia, providing in-hospital or cardiology clinic visits to families when they are at their most vulnerable. Our team is made up of caring professional staff, including several heart parents.

Australians diagnosed as living with CoHD

babies born each year in Australia with CoHD

immediate family members touched by CoHD

children who will die from CoHD in Australia each week

HeartKids Impact Reports

HeartKids is pleased to present reports and updates on the impact of our services and how we are tracking against our organisation’s strategic objectives.

The Board of HeartKids each year publishes its Impact Report (or Annual Report) and publishes its Annual Financial Statements (audit report) to inform supporters, donors and partners about our work.

We routinely report on specific programs or projects to update you on how your funds are invested to achieve our mission and to let you know about the impact they are having on those impacted by CoHD.

Impact Report 2022/2023

Impact Report 2021/2022

Impact Report 2020/2021

Impact Report 2019/2020

Impact Report 2018/2019

Impact Report 2017/2018

Impact Report 2016/2017

Advocacy Work

HeartKids is the only National not-for-profit organisation solely focused on support and advocating for people impacted by CoHD.

As a leading consumer health advocate organisation we support patients and their families by advocating on their individual and collective behalf to Australian, State and Territory Governments, health and hospital networks, and other agencies that play a part in the CoHD journey.

To date HeartKids has campaigned for and achieved:

  • A National Childhood Heart Disease Action Plan funded by the Australian Government which is currently being actioned.
  • Increased investment in research by the Government and others. In February 2019 the Minister for Health the Hon. Greg Hunt pledged $20 million in research funding and announced the Conquering Childhood Heart Disease Research Mission. The most significant single investment in childhood heart disease research in HeartKids 40 year history; and
  • To ensure patients and their families/ carers gain equitable access to government assistance and support.

HeartKids continues to advocate to the Australian Government to ensure fair, equitable and transparent access to the National Disability Insurance Scheme (NDIS). Currently families and adults living with CoHD attempting to access NDIS support are faced with a range of conflicting information regarding eligibility for support. HeartKids continues to lobby the government to clarify this confusion.

Research Projects

HeartKids are dedicated to championing important research to deepen understanding and enhance outcomes for those living with CoHD. We collaborate with esteemed researchers to promote and share impactful studies that seek community involvement.

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