In order to promote awareness of rare diseases and to inform about the value of orphan and ultra-orphan drugs, AELMHU and FEDER, in collaboration with the National Association of Health Informers (ANIS), organised the training day "Spain and rare diseases: current events and major challenges for the future" at the Press Association of Madrid, which, aimed at journalists, analysed the current situation of these pathologies from different angles: social, research, clinical, regulatory and economic.
In addition to the participation of AELMHU's President, Josep Maria Espinalt, and FEDER's Treasurer, Santiago de la Riva, Dr. Pablo Lapunzina, Scientific Director CIBERER Rare Diseases; Dr. Encarna Guillén, Head of the Clinical Genetics and Rare Diseases research group at the Hospital Clínico Universitario Virgen de la Arrixaca; and economist Jorge Mestre-Ferrándiz also participated.
