Author/Editor     Stanimirović, Dalibor; Murko, Eva; Battelino, Tadej; Grošelj, Urh
Title     Development of a pilot rare disease registry
Type     članek
Vol. and No.     Letnik 14, št. 172
Publication year     2019
Volume     str. 1-13
ISSN     1750-1172 - Orphanet journal of rare diseases
Language     eng
Keywords     redke bolezni
registri
Slovenija
rare diseases
pilot rare disease registry,
national rare disease registry
rare disease ecosystem
case studies
focus groups
Slovenia