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As.It.O.I. Onlus e il “Centro Malattie Rare Displasie Scheletriche e Metabolismo Osseo” dell’Azienda Ospedaliera Universitaria Policlinico Umberto I Roma promuovono il progetto HELP!.
Obiettivo del progetto è valorizzare e potenziare l’attività del “Centro Malattie Rare Displasie Scheletriche e Metabolismo Osseo” dell’Azienda Ospedaliera Universitaria Policlinico Umberto I Roma attraverso una migliore assistenza ai pazienti.
Si vuole assicurare una maggiore vicinanza del personale medico, infermieristico e psicologico rispetto ai pazienti affetti da Displasie Scheletriche, rinnovando l’incarico ad una figura professionale in grado di occuparsi delle pratiche che altrimenti impiegherebbero i medici e distoglierebbero tempo e risorse per l’assistenza del paziente.
Il Centro segue più di mille pazienti affetti da Displasie Scheletriche (Osteogenesi Imperfetta, Simdrome di Ehlers-Danlos, Displasia Fibrosa, Ipofosfatasia, Esostori Multiple, ecc…) afferenti dalle diverse Regione Italiane, che necessitano di assistenza e sostegno nel percorso diagnostico e terapeutico. All’interno del Centro operano medici, infermieri e psicologi, insieme all’operatore amministrativo che ha permesso, nel tempo, di decongestionare l’attività amministrativa dei medici permettendo loro di utilizzare il proprio tempo lavorativo per l’assistenza ai pazienti, lo studio di nuovi protocolli terapeutici e la ricerca clinica indispensabile per assicurarenuovi scenari terapeutici.
Le attività di ricerca medica del Centro sono concentrate sul follow-up clinico dei pazienti con Displasie Scheletriche e si basa sull’esperienza e sui dati raccolti dalle attività di assitenza in differenti ambiti e discipline.
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