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The European Gaucher Alliance: a survey of member patient organisations’ activities, healthcare environments and concerns

BACKGROUND: The European Gaucher Alliance (EGA) was established in 1994 and constituted in 2008 as an umbrella group supporting patient organisations for Gaucher disease. Every two years, the EGA conducts a questionnaire survey of member associations to help develop its priorities and annual work pr...

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Detalles Bibliográficos
Autores principales: Žnidar, Irena, Collin-Histed, Tanya, Niemeyer, Pascal, Parkkinen, Johanna, Lauridsen, Anne-Grethe, Zariņa, Sandra, Cohen, Yossi, Manuel, Jeremy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4158124/
https://www.ncbi.nlm.nih.gov/pubmed/25178161
http://dx.doi.org/10.1186/s13023-014-0134-4