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The involvement of patient organisations in rare disease research: a mixed methods study in Australia
BACKGROUND: We report here selected findings from a mixed-methods study investigating the role of Australian rare disease patient organisations (RDPOs) in research. Despite there being many examples of RDPOs that have initiated and supported significant scientific advances, there is little informati...
| Autores principales: | , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
BioMed Central
2016
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| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4709899/ https://www.ncbi.nlm.nih.gov/pubmed/26754025 http://dx.doi.org/10.1186/s13023-016-0382-6 |