IDefine Europe

IDefine Europe is a non-governmental organisation based in Slovenske Konjice, Slovenia working on health, medical research, science & research +1 more.

IDefine Europe is an NGO founded in Slovenia by parents of children with rare diseases. It is dedicated to advocacy and research for rare neurodevelopmental disorders, with an initial focus on Kleefstra syndrome. The organisation combines lived experience of patients and caregivers with research disciplines such as data science, AI and clinical genetics. Its work includes data collection and registries, the Rare Disease Observatory, a Kleefstra syndrome worldwide map, and knowledge transfer to clinicians, patients and parents. It operates globally, coordinates a European alliance of national Kleefstra syndrome patient organisations, and works with partners in Europe, the USA, Canada and Australia.