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Position paper sulla presa in carico delle malattie rare e ultrarare in Italia: generalizzazioni a partire dal caso paradigmatico delle malattie da accumulo lisosomiale

Author

Listed:
  • Verdiana Morando
  • Lucia Ferrara
  • Valeria D. Tozzi

Abstract

Il contributo ? il position paper sulla presa in carico delle malattie rare e ultrarare, frutto della consensus conference a cui ha preso parte un expert panel group, composto dai principali portatori d?interesse istituzionali di rilevanza nazionale. I risultati sono proposti su tre livelli: il metodo della consesus conference e lo scenario nazionale sulle malattie rare; la presentazione di dieci priorit? per migliorare la gestione delle malattie rare in una logica multilivello (europea, nazionale, regionale e aziendale); la proposizione di soluzioni per la continuit? assistenziale in linea con le scelte sulla gestione delle cronicit?.

Suggested Citation

  • Verdiana Morando & Lucia Ferrara & Valeria D. Tozzi, 2017. "Position paper sulla presa in carico delle malattie rare e ultrarare in Italia: generalizzazioni a partire dal caso paradigmatico delle malattie da accumulo lisosomiale," MECOSAN, FrancoAngeli Editore, vol. 2017(102), pages 7-31.
    • Handle: RePEc:fan:mesame:v:html10.3280/mesa2017-102002
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