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Ima ih 250 tisuća, a nitko ne mari za njih: Na točnu dijagnozu čekaju i do dvije godine

Hrvatska još nema registar oboljelih od rijetkih bolesti, inovativne terapije teško su dostupne, lijekovi se slabo uvrštavaju na listu lijekova HZZO-a socijalna i psihološka podrška je nedostatna, upozorava savez udruga pacijenata u povodu Međunarodnog dana rijetkih bolesti, 28. veljače


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