Rare pain conditions in children, such as erythromelalgia and congenital insensitivity to pain, are often set aside in pediatric research as clinical “outliers.” By overlooking these small groups, we may miss a vital opportunity to understand fundamental nociceptive mechanisms, leaving these children, and many others, without effective, evidence-based treatments. This plenary will describe Dr. Ocay’s innovative research program focused on leveraging rare pain disorders to transform the broader landscape of pediatric pain care. Relevant work including mapping existing literature, engaging people with lived experience, and the development of the international PED-EMERGE registry will be described. These initiatives will showcase how aggregating longitudinal genetic and registry data across global networks can overcome sample size limitations and prioritize outcomes that matter directly to patients. Dr. Ocay will also share practical insights into how extreme sensory profiles unveil novel biological targets and lead to innovative assessment tools that can increase research accessibility. Dr. Ocay will address the challenges and opportunities in bridging bench-to-bedside discoveries and demonstrate how lessons learned from rare conditions offer a powerful, translational blueprint for advancing precision pain management for all children.

In this plenary, Professor Christina Liossi will draw on 30 years of clinical and research experience to explore how pain care can be transformed for children and young people living with life-limiting and life-threatening conditions. She will consider the assessment and management of the different forms of pain they may experience throughout the course of their illness, including acute, procedural, chronic, and breakthrough pain, across diverse conditions, clinical trajectories, care needs, and developmental stages. Throughout, she will integrate the best available evidence with insights from clinical practice and lived experience.

Drawing on her innovative programme of research, Professor Liossi will illustrate how placing children, young people, and their families at the centre of research and intervention development can lead to pain care that is effective, inclusive, and scalable. She will demonstrate how insights gained from caring for children and young people with life-limiting and life-threatening conditions can provide a powerful foundation for advancing personalised and precision approaches to paediatric pain management more broadly.

The plenary will also examine the challenges and opportunities involved in translating evidence into sustainable and meaningful improvements in clinical practice. Professor Liossi will conclude by looking towards a future in which pain care is developed with children, young people, and their families from the time of diagnosis, rather than simply delivered to them in response to difficulties as they arise. This approach aims to ensure compassionate, effective, and individually tailored care throughout the course of serious illness, so that every moment matters.