Living with childhood-onset heart disease (CoHD) as an adult comes with unique challenges and experiences.

Find tailored support, resources, and a community that understands, empowering you to live your life to the fullest.

Being an Adult with CoHD

Improved Childhood onset Heart Disease (CoHD) treatments mean that for the first time ever, there are more adults than children in living with CoHD in Australia. As an adult with CoHD you are one of a community of over 32,000 thriving with a CoHD diagnosis.

HeartKids recognises living with CoHD, whether diagnosed in childhood or as an adult, involves unique lifelong challenges and needs. We are committed to supporting you throughout your life, offering helpful resources and guidance tailored to your evolving circumstances.

We can connect you with a wide range of peers who have similar experiences, helping you find strength, understanding, and confidence in our lifelong HeartKids community.


There’s no denying living as an adult with CoHD presents unique challenges. Find the tailored support you need to manage your adult heart condition with the guidance of HeartKids.

Support Services

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.

When you and your loved ones need to go to hospital in an emergency or for treatments, our HeartKids Support Coordinators provide practical, emotional, and guiding support to assist in meeting your immediate needs while you navigate your new circumstances. We want you to be supported and well-informed throughout your healthcare journey.

HeartKids offer:

  • Direct support from a HeartKids Support Coordinator
  • Education and information resources
  • Mental health support via HeartKids and external mental health supports
  • HeartKids Helpline services, five days a week
  • In-hospital events and morning teas

HeartKids are here to support you at every step of your journey, no matter where you are. Our teams are ready to help you figure out what comes next after leaving the hospital, navigate daily life, and face any challenges that come your way.

For families and individuals managing CoHD outside the hospital, HeartKids offers:

  • Check-ins and support from a HeartKids Support Coordinator
  • Mental health support
  • Access to the HeartKids Helpline, available five days a week
  • Customised resources and information
  • Expert referrals to the right services

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. Our team is here to listen and assist without judgment, ensuring everyone feels supported.

You can call the Helpline to access support and information about:

  • Information and education resources on CoHD
  • Peer support programs in your area
  • Telephone and online support groups
  • Professional mental health support
  • Information regarding government subsidies for travel and accommodation
  • What you need to know when preparing for a hospital stay or treatment
  • Referrals to relevant services

Our bereavement support extends to all individuals and families experiencing the loss of a loved one to CoHD. The HeartKids team provide non-judgmental listening, information and resources, professional mental health support referrals, and face to face support sessions across major Australian cities, as well as virtual opportunities for those across the country/in rural and remote settings. We also facilitate access to specialist grief support, and host support groups and events to connect those with shared experiences. Whether your loss is recent or occurred years ago, HeartKids is here to ensure you never have to walk this path alone, offering support and resources every step of the way.

HeartKids dedicated mental health services are designed to support your emotional and psychological needs through:

  • Individual or Family Counselling: Tailored sessions to help you cope with the challenges of CoHD, offering support and strategies for emotional resilience.
  • Online Hearts and Minds Program: A supportive online discussion group to connect with others, share experiences, and learn from collective wisdom.
  • Navigating Your CoHD Journey Workshops: Online workshops providing practical advice and insights to help manage the complexities of living with CoHD.


Connecting with those who understand can make a world of difference as an adult with CoHD. Discover ways to join our HeartKids community and share your experiences, gain insights, and find companions in your CoHD journey.


Join us for social meetups, family fun days, and support groups near you. Experience a supportive community environment where you can connect with peers, access expert knowledge, and find resources to empower your journey. Explore our events calendar and register today to get involved!

See Events


Everyone directly impacted by CoHD needs someone to champion them. If you are looking for a way to connect with other adults with CoHD whilst giving back, volunteering with HeartKids is a rewarding way to help others in our community.
Join our more than 800 volunteers across Australia and become a champion of the heart. HeartKids is able to provide quality services to children, young people, and adults with CoHD with the help of our HeartKids volunteers.

Why Volunteer With HeartKids?

At HeartKids, we ensure volunteering with us is a rewarding and meaningful experience. We pair you with a role that suits your skills, background, and reason for volunteering and provide all necessary information and training. You get the opportunity to give back and connect with the community and assist other young people, kids, and families in need.

See All Volunteer Events


Sign up to receive monthly updates with the latest news, CoHD information and resources, and upcoming events and campaigns across the HeartKids community.

Information and Resources

Discover reliable information and resources for adults living with a heart condition, developed in collaboration with leading experts in CoHD other health fields.


Find useful and accessible videos designed to help everyone understand, manage, and thrive with CoHD.

Fact Sheets

Concise and informative resources tailored for adults for all stages of their CoHD journeys.

Resource Library

HeartKids’ Resource Library is a one-stop-shop of information and support materials for adults with CoHD.

From the Heart Podcast

Explore the ‘From the Heart’, HeartKids’ podcast offering insights into living life well with CoHD.

We use cookies to improve your experience of using this website. By continuing to use this website you have consented to using cookies placed on your computer. To find out more please refer to our Privacy Policy.

This will close in 0 seconds