Zoe Karakikla-Mitsakou is an ERN ReCONNET ePAG representative for rare connective tissue diseases, representing Systemic Lupus Erythematosus (SLE).
Zoe joined Lupus Europe in 2020 as a project manager. In 2023, she became General Secretary of Lupus Europe, supporting the organisation’s every day operations, governance, partnerships, and project management. In this role, she works across European collaborations to ensure patient perspectives are structurally integrated in research and actions.
Zoe volunteers for the Lupus Europe Patient Advisory Network (PAN), a group of trained patient representatives who act as a liaison between the lupus community and the scientific community. She is a Fellow in the PAN. Through the PAN work, Zoe contributes patient input to scientific projects, clinical trials, EULAR task forces, and ERN-related research, supporting patient involvement from study design through to implementation and access.
Within Lupus Europe Zoe is the project manager of LupusGPT, a patient-led, multilingual AI tool designed to provide free, accessible, valid information on lupus to patients. This tool was co-created by patients, clinicians, and digital specialists and is – to our knowledge – the first of its kind. A core aim of the LupusGPT project is to develop a transferable blueprint that can be adapted by other rare and complex disease communities, enhancing the reach of accessible, free, valid information on rare diseases for patients.
Living with lupus, antiphospholipid syndrome (APS), and other rare conditions herself, Zoe brings both lived and professional experience to her work. She believes collaboration across diseases is essential to addressing shared challenges such as diagnostic delay, fragmented care, and inequities in access. As an ePAG representative for SLE, she is ready to work and is honoured to have the opportunity to contribute to ERN ReCONNET’s work.
‘I’m interested in approaches that are careful, collaborative, and replicable — so that good ideas can travel beyond a single disease or project and more people can benefit. ERN embodies that approach.’
