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 signed Memorandum of Understanding (MoU), both organisations have committed to working together to provide compassionate, coordinated support to families across Australia. The partnership will strengthen referral pathways, promote access to specialist resources, and create new opportunities to co-design initiatives that address the unique mental health needs of siblings.

Siblings Australia brings over two decades of experience in supporting children and young people who grow up alongside a brother or sister with disability or chronic illness. HeartKids, as the only national not-for-profit solely focused on people impacted by CoHD, provides practical, emotional, and peer support from diagnosis through to adulthood and beyond.

“When a child is diagnosed with childhood-onset heart disease, the impact extends across the entire family – especially siblings. This partnership strengthens our ability to support those who may not always be front and centre but are deeply affected. By working together with Siblings Australia, we’re helping ensure that siblings have access to specialised support they need and deserve.”

– Marcus Sandmann, Chief Executive Officer, HeartKids

The agreement includes mutual promotion of services, the establishment of referral processes, and joint collaboration on research, forums, and campaigns.Resources developed through this partnership will be informed by lived experience and delivered in ways that are accessible and appropriate to the needs of siblings across different life stages.

“Siblings often carry quiet grief and unspoken worry when a brother or sister faces serious illness. This partnership ensures their experiences are not invisible. Together, we can create space for their stories, support their healing, and recognise their vital place within the core of the family.”
– Dr Shannon Schedlich, CEO of Siblings Australia

This partnership reflects a shared commitment to ensuring that the needs of siblings are not overlooked during a times of hospitalisations, loss and beyond. By combining the reach and expertise of both organisations, the initiative aims to reduce isolation, improve mental wellbeing, and provide a stronger safety net for families navigating the complex realities of CoHD.

About CoHD

CoHD incorporates a group of abnormalities of the heart and is a general name for any type of malformation of the heart, heart valves or major blood vessels which are present at birth or are acquired during childhood. Conditions can range from simple to complex and can occur alone orin groups, depending on how the heart has developed.