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Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

BACKGROUND: Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In...

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Detalles Bibliográficos
Autores principales:	Litzkendorf, Svenja, Hartz, Tobias, Göbel, Jens, Storf, Holger, Pauer, Frédéric, Babac, Ana, Lührs, Verena, Bruckner-Tuderman, Leena, Schauer, Franziska, Schmidtke, Jörg, Biehl, Lisa, Wagner, TOF, Graf von der Schulenburg, J-Matthias, Frank, Martin
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	JMIR Publications 2018
Materias:	Protocol
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5970281/ https://www.ncbi.nlm.nih.gov/pubmed/29752252 http://dx.doi.org/10.2196/resprot.7425

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