There are more than 7,000 known rare diseases, affecting a total of more than 400 million people in the world (30 million people in the EU). We are IDefine Europe, Foundation for the Advanced Treatment of Rare Genetic Diseases, an NGO based in Slovenia, Central Europe. The foundation is dedicated to advocacy and research activities of rare diseases.
The field of rare diseases is very complex, encompassing a variety of disciplines, that is why we are carrying out different activities. Our focus is all kind of relevant data. Access to data is crucial to understanding rare diseases and re-use of different data for research purposes can lead to important discoveries. Together we can gain new insights about rare diseases, building community and resources that lead to better care and life-changing treatments.