High quality, patient centred and coordinated care for Alstrom syndrome: a model of care for an ultra-rare disease

BACKGROUND: Patients with rare and ultra-rare diseases make heavy demands on the resources of both health and social services, but these resources are often used inefficiently due to delays in diagnosis, poor and fragmented care. We analysed the national service for an ultra-rare disease, Alstrom sy...

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Detalles Bibliográficos
Autores principales: Van Groenendael, Stephanie, Giacovazzi, Luca, Davison, Fabian, Holtkemper, Oliver, Huang, Zexin, Wang, Qiaoying, Parkinson, Kay, Barrett, Timothy, Geberhiwot, Tarekegn
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2015
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4657378/
https://www.ncbi.nlm.nih.gov/pubmed/26603037
http://dx.doi.org/10.1186/s13023-015-0366-y

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