Journal title MECOSAN
Author/s Verdiana Morando, Lucia Ferrara, Valeria D. Tozzi
Publishing Year 2018 Issue 2017/102 Language Italian
Pages 25 P. 7-31 File size 23853 KB
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European Reference Networks (ERNs), consensus conference. Position paper on the management of rare and ultrarare diseases in Italy: Lessons learnt from the case of Lysosomial storage diseases The article is a position paper over the management of rare diseases. The paper provides the results from a consensus conference that sought the participation of an experts’ panel group made up of the key Italian stakeholders. Results from the consensus are organised around three major assets: the explanation of the consensus conference method compared to the national state of art with rare disease management; the consensus around ten key priorities for improving rare disease management through a multi-layer governance (European, national, regional and local); and a set of recommendations and solutions for fostering integrated care of rare disease within chronic care management models developed at the regional/local levels.
Keywords: Rare disease, clinical networks, integrated care pathways (ICP), European Reference Networks, consensus conference
Verdiana Morando, Lucia Ferrara, Valeria D. Tozzi, Position paper sulla presa in carico delle malattie rare e ultrarare in Italia: generalizzazioni a partire dal caso paradigmatico delle malattie da accumulo lisosomiale in "MECOSAN" 102/2017, pp 7-31, DOI: 10.3280/MESA2017-102002