Anna Kole | Global Patient Engagement Lead
UCB Pharma

Anna Kole is a public health professional with over 20 years of international experience in health education, communication, fundraising, advocacy and policy making for people living with rare disease and other vulnerable populations. Since 2022 she has led Global Patient Engagement for Myasthenia Gravis at UCB Pharma – meaningful engaging patients and patient associations in the drug development process and driving collaboration with patients and all stakeholders across a number of platforms. Prior to joining UCB she helped grow EURORDIS over 15 years in a number of positions covering diagnosis, patient journeys and care pathways, Centers of Expertise and Reference Networks, patient participation in research, registries and data collection. In her last role as Public Health Policy Director, she led the Rare 2030 Foresight Study to propose recommendations for the future of rare diseases policies in Europe - a culmination of recommendations which she now proudly executes at UCB and continues to serve as a strategic framework for EURORDIS today. Previous positions also included representing the patient perspective in research consortia (e.g. IRDIRC, RD Connect, TREAT NMD) and a range of policy and patient engagement activities at Orphanet and NORD in the US. In her free time, Anna runs pop-up charity sales for patient organizations at The Charity Shop - Paris. Anna holds a Master's in Women and Child Health from the Gillings Global School of Public Health