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Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review
BACKGROUND: Patients and their families have become more active in healthcare systems and research. The value of patient involvement is particularly relevant in the area of rare diseases, where patients face delayed diagnoses and limited access to effective therapies due to the high level of uncerta...
| Autores principales: | , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
BioMed Central
2017
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5741909/ https://www.ncbi.nlm.nih.gov/pubmed/29273068 http://dx.doi.org/10.1186/s13023-017-0738-6 |