Role, function and challenges of multidisciplinary centres for rare diseases exemplified for neurofibromatosis type 1 syndrome

PURPOSE: Neurofibromatosis type 1 (NF1) syndrome is a common rare/orphan disease that manifests itself early in the paediatric age. It imposes a considerable burden upon patients as well as on caregivers. Decisions regarding optimal care often rely on several medical instances working together as a...

Descripción completa

Detalles Bibliográficos
Autores principales: Toledano-Alhadef, Hagit, Mautner, Victor-Felix, Gugel, Isabel, Zipfel, Julian, Haas-Lude, Karin, Constantini, Shlomi, Schuhmann, Martin U.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2020
Materias:
Annual Issue Paper
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7276654/
https://www.ncbi.nlm.nih.gov/pubmed/32514759
http://dx.doi.org/10.1007/s00381-020-04708-1

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7276654/
https://www.ncbi.nlm.nih.gov/pubmed/32514759
http://dx.doi.org/10.1007/s00381-020-04708-1

Ejemplares similares