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Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia

BACKGROUND: According to rough estimates, there are approximately 150,000 rare disease patients in Slovenia (out of a total population of 2 million). Despite the absence of accurate epidemiological data on their status, these figures reveal the great importance of this area for the Slovenian healthc...

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Detalhes bibliográficos
Publicado no:Orphanet J Rare Dis
Main Authors: Stanimirovic, Dalibor, Murko, Eva, Battelino, Tadej, Groselj, Urh
Formato: Artigo
Idioma:Inglês
Publicado em: BioMed Central 2019
Assuntos:
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC6617557/
https://ncbi.nlm.nih.gov/pubmed/31288838
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-019-1146-x
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