New HeartKids alliance puts siblings first
New partnership launched May 2025 to support siblings of kids with CoHD, including those grieving a loss.
What’s happening?
A new national partnership has been launched between HeartKids and Siblings Australia to provide better support for siblings of children impacted by childhood-onset heart disease (CoHD). The collaboration will especially focus on helping siblings cope with grief following the death of a brother or sister.
The agreement, formalised through a signed Memorandum of Understanding (MoU), outlines shared commitments to improve referral pathways, co-develop specialist resources, and expand access to peer and emotional support services tailored to siblings.
Why it matters
Siblings of children with serious health conditions often face their own emotional challenges—including anxiety, grief, and a sense of invisibility—yet they frequently go unrecognised in formal care structures. This partnership is designed to fill that gap by combining the unique strengths of both organisations.
HeartKids, Australia’s leading charity supporting those affected by childhood-onset heart disease, provides lifelong practical, emotional, and peer support from diagnosis through to adulthood. With nearly 50 years of service and a network supporting over 72,000 families, HeartKids ensures no one faces this journey alone.
Siblings Australia brings more than two decades of expertise in supporting siblings of children and adults with disability or chronic illness. The organisation delivers sibling-specific programs, education for families and professionals, advocacy, and research to help siblings feel acknowledged, connected, and resilient.
“When a child is diagnosed with childhood-onset heart disease, the impact extends across the entire family – especially siblings,” said Marcus Sandmann, CEO of HeartKids. “This partnership strengthens our ability to support those who may not always be front and centre but are deeply affected.”
Dr Shannon Schedlich, CEO of Siblings Australia, added: “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.”
Local Impact
Families across the Gold Coast and surrounding areas will benefit from enhanced support as a result of this partnership. New referral pathways will allow families to easily connect with services specific to siblings, while co-designed resources will be accessible at all stages—from early childhood through adulthood, including periods of hospitalisation and bereavement.
The initiative aims to reduce emotional stress and social isolation for siblings, while helping families access trauma-informed support that strengthens the broader household.
By the numbers
One in every 100 babies in Australia is born with a heart condition.
Siblings of children with a chronic illness or disability are twice as likely to experience mental health challenges.
HeartKids currently supports over 72,000 families impacted by CoHD nationwide.
Zoom In
The partnership will deliver new co-created support tools, informed by families and siblings with lived experience. This includes peer-led grief circles, counselling referrals, digital toolkits, and awareness-building forums for healthcare professionals and parents.
Resources will be tailored for various life stages and will consider the unique emotional development of siblings throughout the family’s journey with CoHD.
Zoom Out
This national initiative reflects a growing recognition that sibling mental health must be addressed within chronic disease and paediatric care models. By combining forces, HeartKids and Siblings Australia are leading the way in ensuring that no sibling feels forgotten during a sibling’s health crisis or after their passing.
The agreement also aligns with Australia’s broader shift toward preventative mental health care and wraparound family support services.
What to look for next
HeartKids and Siblings Australia are set to roll out a suite of co-branded resources later in 2025. Families and professionals can expect to see new awareness campaigns, educational webinars, online support groups, and tools designed specifically for siblings navigating life alongside a heart condition diagnosis.