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Epidermolysis bullosa House Austria and Epidermolysis bullosa clinical network: Example of a centre of expertise implemented in a European reference network to face the burden of a rare disease
Accurately addressing the diverse and complex issues of rare diseases (RD) in terms of prevention, recognition, diagnosis, treatment, care and research along key RD specificities, such as great heterogeneity, a limited number of patients, scarcity of relevant knowledge and expertise as well as enorm...
| Autores principales: | , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
Springer Vienna
2016
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5247537/ https://www.ncbi.nlm.nih.gov/pubmed/27909793 http://dx.doi.org/10.1007/s00508-016-1133-3 |