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Malattie rare: percorso informativo per gli operatori sanitari

SIENA. Sono spesso misconosciute e diagnosticate con ritardo: per questo le malattie rare provocano ulteriori danni ai pazienti e sofferenza per i loro familiari.
Per venire incontro alle richieste delle associazioni dei pazienti, la Regione Toscana ha istituito un Registro delle malattie rare che servirà da base per la costruzione di una rete assistenziale. La Regione inoltre, in collaborazione con il Forum Associazioni Toscane malattie rare e le Aziende Ospedaliero-Universitarie, ha avviato un percorso formativo che ha lo scopo di diffondere la conoscenza del Registro e di fornire agli operatori sanitari le competenze per l’inserimento e l’utilizzo dei dati.
Il percorso si svolgerà nel 2008 e sono previste due giornate per ognuna delle tre aree vaste. A Siena la prima giornata si terrà domani (11 giugno) al Centro didattico, Aula A, del Policlinico Santa Maria alle Scotte.
“Le malattie rare – spiega il professor Antonio Federico, responsabile dell’UO Neurologia e Malattie neurometabolicle del policlinico senese – costituiscono una causa importante di patologie croniche, disabilità e morte prematura sia nei bambini che negli adulti. Spesso, inoltre – continua il professor Federico – i farmaci necessari alla terapia non sono disponibili sul mercato. Questo programma formativo è quindi fondamentale per illustrare l’importanza e le potenzialità derivanti dal registro e dalla rete regionale per le malattie rare”.
Al termine del percorso formativo, completamente gratuito, i partecipanti potranno richiedere i crediti ECM (Educazione Continua in Medicina). Nella seconda giornata, che
si terrà dopo l’estate, saranno approfondite le tematiche legate al registro, alla ricerca e al consenso informato.
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