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.