%0 Journal Article
%T Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia
%A Dalibor Stanimirovic
%A Eva Murko
%A Tadej Battelino
%A Urh Groselj
%J Archive of "Orphanet Journal of Rare Diseases".
%D 2019
%R 10.1186/s13023-019-1146-x
%X Priority areas and critical factors in the RD field highlighted by the expert
%K Rare diseases
%K Pilot rare disease registry
%K National rare disease registry
%K Rare disease ecosystem
%K Case study
%K Focus group
%K Slovenia
%U https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6617557/