In this episode of Better Thinking, Nesh Nikolic speaks with Dr Eden Robertson about the psychosocial needs of families affected by rare disease and how lived experience can drive better, more compassionate healthcare.
Dr Eden Robertson is a Sydney‑based behavioural scientist specialising in understanding and addressing the psychosocial needs of children and families navigating complex, rare disease. For more than a decade, she has worked alongside families, clinicians and advocacy organisations to identify unmet needs and co‑design interventions that are both evidence‑based and genuinely usable in real‑world care. Her academic training spans a Bachelor of Psychology (Honours), a Graduate Certificate in Adolescent and Young Adult Health and Wellbeing, and a PhD in Medicine.
Eden has made significant contributions to her field, including developing the world’s first family decision‑making resource for childhood cancer clinical trials, designing and evaluating a new model of care for caregivers of children with genetic epilepsy, and more recently supporting people affected by inherited retinal diseases to better understand and engage with advanced therapeutics. Highlighting her leadership in the field, she was awarded a prestigious Fulbright Scholarship in 2020.
Drawing on experience across academia, health services and the non‑profit sector, Eden brings a unique cross‑system perspective that strengthens her ability to translate evidence into meaningful, practical solutions for children, families and the teams who support them.
