There are special circumstances related to the study of rare disease entities, such as ACC. It is crucial to combine clinical forces, if not simply to collect enough clinical material. There is no other way to (1) engage enough patients in clinical trials to establish genotype–phenotype correlations, (2) to catalogue a library of mutations and (3) to establish new prognostic markers. However, the ultimate goal of a network goes far beyond bringing together clinicians and scientists from different countries with various technical skills, dedicated to research and care of patients with the same disease. The goal is to share ideas, biological materials, techniques, and research projects – and finally to add clinical value.