Our Story.

Child UnLimited is a pioneering not-for-profit organisation recognised nationally across Australia. Our mission is guided by our tagline: "We Exist to Enhance the Lives of Children with Chronic Illness and their Families through Focused Advocacy and Research." We aim to provide a unified voice for these children and their families, driving advocacy, research, and improvements in care across the nation. Founded to address the stark reality that over one million Australian children—approximately one in five—live with a long-term chronic illness, yet our health, education, and social systems were never designed to support their complex needs. Without a coordinated approach, children with chronic conditions often face fragmented care, disrupted schooling, and overwhelming burdens on their families. Child UnLimited emerged to change this, striving to ensure that every child with a chronic illness receives the care, education, and support they need to thrive.

We have built a vibrant coalition of top-tier researchers, dedicated clinicians, passionate advocates, and supportive families committed to this cause. Together, we take a holistic approach that addresses not only the medical needs but also the emotional, social, and educational challenges faced by children living with chronic illness. By uniting expertise with lived experience, Child UnLimited has become a trusted leader in advancing understanding, support, and policy for paediatric chronic illnesses.

Challenges We Address.

Every step of our journey is driven by the real challenges faced by children with chronic illnesses in Australia. Some of the key issues we are tackling include:

Chronic Illness Is Common but Unsupported

Chronic conditions in childhood are far from rare – over one million children nationwide have a long-term health condition. These young patients account for a significant share of paediatric hospital admissions and bed-days, yet there is still no integrated national approach to managing their ongoing care. Too often, families must navigate a patchwork of services on their own.

Gaps in Healthcare and Policy

Where a child lives or what condition they have can mean the difference between getting help or falling through the cracks. One in three children in rural areas cannot access necessary healthcare due to distance and lack of specialists. Meanwhile, many chronic conditions do not qualify for existing disability support programs like the National Disability Insurance Scheme (NDIS), leaving families with little formal assistance. Overall, there is a lack of coordinated care linking medical treatment with educational and social services. Child UnLimited was created to fill these systemic gaps – pressing for equity in access and a cohesive approach so that no child is left unsupported.

Families Face Overwhelming Burdens

Caring for a child with a chronic illness can be financially and emotionally crushing. Many families incur thousands of dollars in out-of-pocket medical costs each year. Parents frequently reduce work hours or leave jobs to provide full-time care, sacrificing income and putting their own wellbeing at risk. The stress of coordinating treatments, therapies, and schooling – often with limited external support – can take a serious toll on parents and siblings alike.

Education Is Disrupted

Chronic illness can interrupt a child’s education and social development. About 10% of children with chronic illnesses miss National Assessment Program (NAPLAN) tests – double the absence rate of their healthy peers. These children may miss months of schooling for hospitalisations or treatment, and nearly 40% of early school leavers have a chronic illness. Yet there is no consistent national policy to ensure these students can continue learning and stay connected with school during periods of illness. Child UnLimited advocates for educational supports so that illness does not limit a child’s potential.

Our Journey from Inception to National Voice

  • We commenced our journey in 2018 as a Clinical Academic Group within SPHERE (an Advanced Health Research Translation Centre) to enhance care for children with chronic illnesses. This initiative laid the foundation for a collaborative effort bridging clinical practice and research for better outcomes.

  • We expanded our engagement by holding our first family workshops to set research and healthcare priorities. By involving parents and children directly, we emphasised the importance of lived experience and resilience in shaping care – ensuring the voices of families became central to our mission.

  • We hosted a national conference in Adelaide, bringing together clinicians, researchers, and families from across Australia. This milestone event fostered collaboration and knowledge-sharing on a national scale, solidifying our role as a convenor of experts and stakeholders in chronic childhood illness.

  • We gained national recognition through an endorsement by the Australian Health Research Alliance (AHRA). This endorsement strengthened our partnerships across the country and affirmed Child UnLimited’s growing influence as a national coalition dedicated to improving chronic care for children.

  • We officially launched in Parliament, establishing our presence at the highest levels of health policy. This parliamentary launch was a significant turning point, amplifying our advocacy for systemic change and opening doors for direct dialogue with policymakers about the needs of children with chronic conditions.

  • We convened a Transition Roundtable to improve the move from paediatric to adult healthcare for young people with chronic illnesses. By bringing together healthcare providers, patients, and policy experts, we tackled the critical gaps that adolescents face when transitioning to adult care, an often challenging period for those with lifelong conditions.

  • We led a landmark consultation with 33 non-profit organisations to unify advocacy efforts for children with chronic conditions. This nation-wide collaboration aimed to break down silos between disease-specific groups, creating a more powerful, united voice calling for better support systems and policies for all children with chronic health needs.

  • We have evolved into a prominent national body advocating for and supporting children with chronic illnesses and disabilities. Today, Child UnLimited stands as a beacon of hope and innovation in children’s health. We continue to champion new research, influence policy, and drive initiatives that improve the lives of Australia’s most resilient yet vulnerable young people.

Our Vision for the Future

Today, Child UnLimited continues to lead the charge for these children and their families. We serve as a bridge between young people, parents, healthcare professionals, educators, and policymakers – ensuring that those with lived experience are heard at the decision-making table. Through ongoing research and evidence-based advocacy, we provide expert advice to government and industry leaders on improving policies and practices for children with chronic illnesses. We also deliver education and training to schools, healthcare providers, and communities, building greater understanding and capacity to support children with health challenges in all aspects of life. By connecting stakeholders and sharing knowledge, we are strengthening the network of support around each child.

Looking ahead, our vision is a future where no child’s life is limited by a chronic illness. We envisage a truly national strategy that integrates healthcare, education, and social support so that every child, no matter their condition or location, can access the help they need to flourish. Child UnLimited is committed to driving this systemic change. We will continue to champion policy reforms that address gaps in care, promote early intervention and equitable services, and invest in innovative research that delivers better outcomes. Our story is still being written, but our goal remains steadfast: to create an Australia where children with chronic illnesses are empowered to reach their full potential, supported by a community and system that will not let them fall through the cracks.