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The Tuscany Regional Network for rare diseases: from European Reference Networks’ experience to registry based organisation and management model for rare diseases

BACKGROUND: In the European Union, a disease is defined as rare when it affects fewer than 1 in 2000 people. Currently, there are up to 8000 described rare diseases (RDs), collectively affecting 30 million people in the European Union. In 2004 Tuscany region (Italy) established a Regional Network of...

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Detalles Bibliográficos
Autores principales:	Pieroni, Federica, Marrucci, Sonia, Di Pietro, Linda, Berni, Cecilia, Scaletti, Cristina
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2023
Materias:	Research
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576286/ https://www.ncbi.nlm.nih.gov/pubmed/37833795 http://dx.doi.org/10.1186/s13023-023-02947-4

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