Dr Tanja Zdolšek Draksler is actively involved in the field of rare diseases, as a patient advocate for Kleefstra syndrome, a disease her daughter was diagnosed with. Tanja believes that data, technology and collaboration can lead to life-changing treatments. She is active in the international Kleefstra syndrome community and works with IDefine, USA, as an international ambassador and director of data management (IDefine is a non-profit organisation dedicated to discovering life-changing treatments and cures for people with intellectual disabilities due to genetic disorders). In 2022, she founded a non-profit organisation in Slovenia that raises awareness of rare diseases (particularly neurodevelopmental disorders) and promotes the importance of data and technology related to rare diseases (redkegenetskebolezni.ijs.si). She also brought together national Kleefstra syndrome organisations across Europe and linked them into a central coordination centre for Kleefstra syndrome (type 1): the Kleefstra Syndrome Europe Alliance.

Professionally, she works as a research project manager at the Centre for Knowledge Transfer in Information Technologies at the Jožef Stefan Institute in Ljubljana, Slovenia, and is involved in several international research projects dealing with AI/ML, data science, and semantic technologies, covering various fields, from multimedia to mobility, finance, and digital health. Tanja holds a university degree from the Faculty of Electrical Engineering and Computer Science, University of Maribor. She received her PhD from the Faculty of Economics, University of Maribor. She is particularly interested in data management and AI/ML methods in the field of rare diseases. She is also a member of the ERN Ithaca working group, which focuses on digital health solutions.