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The first meeting was held in Stockholm on 30 June 2014, with 7 European patient associations, 9 researchers, geneticists and doctors as speakers, and over 19 European and international doctors and researchers.

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Recognized as legal personality with provision of the Regional Council of Veneto dated 09.12.2015 n ° 815.

Agreement with the AOUI of Verona Prot. 1306 of 12/01/2021. Approved with Resolution no. 1392 of 12/30/2020

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