Set of Rules in Italy for Rare Diseases Management Sanitary Policies and Epidemiologic Data in Puglia


Authors : Alicchio Viviana, Cavallera Filomena, Antonacci Stefania

Volume/Issue : Volume 5 - 2020, Issue 3 - March

Google Scholar : https://goo.gl/DF9R4u

Scribd : https://bit.ly/3ck0RW0

Abstract : Rare disease definition takes into account the low prevalence amongst population of each one of these pathologic conditions, despite of high impact of them worldwide. This work starts from detection of many difficulties in rare disease patients affected management and also analyzes progress on rare desease in Italy and in Puglia. Epidemiologic data, collected by new regional informative sanitary system, highlight main problems in diagnostic-care pathways but also assure efficiency of improvement policies put in place from 2001 to nowadays, by definition of italian and regional sets of rules.

Keywords : Rare Disease; Direct Distribution; Territorial Pharmacy; Diagnosis-Care Pathway.

Rare disease definition takes into account the low prevalence amongst population of each one of these pathologic conditions, despite of high impact of them worldwide. This work starts from detection of many difficulties in rare disease patients affected management and also analyzes progress on rare desease in Italy and in Puglia. Epidemiologic data, collected by new regional informative sanitary system, highlight main problems in diagnostic-care pathways but also assure efficiency of improvement policies put in place from 2001 to nowadays, by definition of italian and regional sets of rules.

Keywords : Rare Disease; Direct Distribution; Territorial Pharmacy; Diagnosis-Care Pathway.

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