In this project we will conduct semi-structured interviews based on the well-established DIPEx Method. Aim of the interviews is to deepen our understanding of the individual experiences of rare disease patients regarding their quality of life, their journey through the healthcare system and their own perspective on their disease. Selected data of the interviews will be made publicly available on the national DIPEx Webpage (dipex.ch). The novel insights of the interviews will be used to foster an ethical analysis of the most common challenges patients are confronted with. Further, the results will be contextualized within national and international policy frameworks in close collaboration with our colleagues from the law faculty.