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National registries of rare diseases in Europe: an overview of the current situation and experiences., Taruscio, Domenica, Vittozzi Luciano, Choquet Remy, Heimdal Ketil, Iskrov Georgi, Kodra Yllka, Landais Paul, Posada Manuel, Stefanov Rumen, Steinmueller Christiane, et al. , Public Health Genomics, 2015, Volume 18, Issue 1, (2015)\par \par }