The National Center for Rare Diseases (Istituto Superiore di Sanità, ISS) is organizing the 6th International Summer School for Registers of Rare Diseases and Orphan Drugs from 10 to 14 September 2018 in Rome, Italy. The school will consist of two learning modules. The first “Registry for Rare Diseases” (10-12 September 2018) will provide participants with useful tools and methodologies for planning and managing registration activities. On September 13-14 will be held a second module “Bring Own Own Data – BYOD”, which will give practical experience and the participants will work with the experts on FAIR data. The school is suitable for researchers, medical professionals, registry administrators, representatives of patient associations and other professionals involved or intending to create a registry of rare diseases, including registers for European reference networks.
You can sign up here by May 31, 2018, and it is free and can be done for each module or for both. Traveling and accommodation are not covered by the organizers.
A program for the event can be found here. For more information, please contact the organizers of this address rareregistries-school@iss.it .