International Summer School “Rare diseases and orphan drug registries”

International Summer School “Rare diseases and orphan drug registries” will take place on 15 – 19 September 2014 in Rome, Italy. The event is being organized by the National Centre for Rare Diseases and the Italian National Institute of Health. It is aimed at researchers, clinicians, health authorities, policy makers, academics, all the relevant experts, students and patient organizations, who are involved or intend to establish a rare disease patient registry. During this training the participants will be presented the main concepts and methodological steps that must be undertaken  in the establishment and management of such a registry. They will also learn how to ensure its usefulness, scientific soundness and sustainability. For more information, please visit the official website of the event.