L’ospedale Bambino Gesu’ a servizio delle malattie rare
L’ospedale Bambini Gesu’, in collaborazione con Deutsche Bank, aiuta i bambini malati della Sindrome di Williams mettendo loro a disposizione dei tutor
Si arricchisce di una nuova importante risorsa il sistema di risposte dell’Ospedale Pediatrico Bambino Gesù alle malattie rare, un unicum nel panorama sanitario internazionale. Accanto al sistema multidisciplinare per la diagnosi e la cura dei piccoli pazienti con patologie rare o rarissime, all’Ambulatorio dedicato e alle attività di ricerca, è stato avviato un percorso di empowerment per accompagnare bambini e ragazzi nel cammino verso la conquista del più alto grado di autonomia possibile e per sostenere le famiglie nel superare gli ostacoli psicologici, burocratici e sociali che quotidianamente si presentano.
Nell’ambito di questo processo, grazie all’impegno di Deutsche Bank e dell’Associazione Italiana Sindrome di Williams, sarà selezionata una persona affetta da questa rara patologia che svolgerà una attività di tutoraggio presso l’Ufficio Relazioni con il Pubblico del Bambino Gesù accompagnando i bambini con Sindrome di Williams e le loro famiglie nell’esperienza dell’assistenza ospedaliera. Un ulteriore decisivo passo verso quell’attenzione a 360° che l’Ospedale riserva a tutti i suoi piccoli pazienti e più estesamente al concetto di salute della popolazione.
Le malattie rare colpiscono 1 persona ogni 2000, compromettendone spesso la qualità della vita. Nel mondo ne sono state individuate circa 8000 e la maggior parte è presente già alla nascita o compare nei primi anni di vita. In Italia le patologie rare colpiscono 2 milioni di persone, 1.700.000 delle quali al di sotto dei 16 anni. I sintomi coinvolgono generalmente più organi, compreso il sistema nervoso, e l’andamento tende a essere cronico o addirittura progressivo con frequente sviluppo di disabilità motorie e intellettive. Ad oggi viene diagnosticato circa il 50% delle patologie rare.
La sindrome di Williams, in particolare, è una rara malattia genetica causata dalla perdita di un piccolo frammento del cromosoma 7 che provoca ritardo cognitivo, deficit dello sviluppo, malformazioni cardiache e vascolari ed è caratterizzata da peculiari tratti del volto. Ne è affetta circa 1 persona ogni 20.000. Attualmente non esiste una cura specifica, ma è di fondamentale importanza la terapia riabilitativa, con interventi educativi precoci e mirati che permettano di migliorare lo sviluppo delle competenze cognitive e sociali. Ed è anche in questa direzione – oltre all’impegno costante sul fronte della ricerca scientifica – che si concentrano le energie dell’Ospedale Pediatrico Bambino Gesù e di realtà protagoniste come l’Associazione Italiana Sindrome di Williams grazie anche al sostegno responsabile di soggetti come Deutsche Bank. (com)
malattie bambini, malattie rare, ospedale, ospedale bambini, Ospedale pediatrico bambino gesù, Sindrome di Williams
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herbal tea
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