Public Library Miran Jarc Novo mesto - all departments (SIKNM)
13.
Urban potrebuje gensko zdravilo čim prej : dobrodelni koncert za Urbana Miroševiča
Žnidaršič, Mojca, 1972-
Urban Miroševič ima redko gensko bolezen, sindrom CTNNB1, in je doslej prvi in edini otrok v Sloveniji s to diagnozo, na svetu pa jih je le okoli 400. Zanj skupina domačih in tujih strokovnjakov ...razvija posebno gensko zdravilo, gensko terapijo, podobno, kot je pomagala malemu Krisu iz Kopra. Da bi jo lahko prejel, so starši ustanovili poseben sklad, znotraj katerega vodijo prvi program razvoja genske terapije za sindrom CTNNB1. Za to morajo zbrati dva milijona evrov, trenutno že imajo 1,6 milijona, akciji zbiranja denarja pa se z dobrodelnim koncertom Imeti rad, ki bo v soboto, 4. marca, pridružuje tudi Rotary klub Sevnica
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