International summer school on Rare disease and orphan drug registries

International Summer School on Rare disease and orphan drug registries will be launched next week in Rome, Italy. The event is organized by the Institute for Rare Diseases – Italy within the project EPIRARE (European Platform for Rare Disease Registries) and is intended for researchers, clinicians, policy makers, patients. During this training participants will learn the basic steps that must be taken in the establishment and management of patient registries for rare diseases according to the new technologies, new data collection and methods. Registration for participants is free and open to 12.09.2014 (Friday). For more information about the summer school, registration or using online streaming, please visit the official website of the Italian Institute for Rare Diseases.