Il 29 febbraio, ogni quattro anni, celebriamo la Giornata Mondiale delle Malattie Rare, decretata nel 2008 da EURORDIS, un’associazione che raggruppa quasi 1000 associazioni di pazienti.
Definizione di Malattie Rare
Una malattia rara coinvolge meno di 50 individui su 100.000. Al momento, esistono oltre 6000 patologie che colpiscono circa il 5% della popolazione mondiale, ovvero 300 milioni di persone.
Impatto in Italia
In Italia, quasi due milioni di individui sono affetti da una malattia rara, secondo stime dell’Istituto Superiore di Sanità.
Gravità e Origine delle Malattie Rare
Le malattie rare sono gravi, spesso letali, con il 72% di origine genetica e il 70% che esordisce durante l’età pediatrica.
Ruolo dei Presidi Ospedalieri
I Presidi Ospedalieri, come quello di Saronno, sono parte dei centri di diagnosi e cura accreditati dalla Rete nazionale malattie rare.
Lotta Contro le Malattie Rare
Riconoscere l’anomalia del codice genetico è il primo passo cruciale per caratterizzare la malattia e intraprendere, quando possibile, terapie genetiche
89 commenti
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