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

Hagit Toledano-AlhadefVictor-Felix MautnerIsabel GugelJulian ZipfelKarin Haas-LudeShlomi ConstantiniMartin U Schuhmann

Published in: Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery (2020)

Chronic rare diseases that start in the paediatric age mandate long-term follow-up most often by several disciplines. NF1 syndrome is an example of a multidisciplinary centre in order to enhance the quality of care.

Keyphrases

quality improvement
healthcare
case report
signaling pathway
emergency department
intensive care unit
palliative care
lps induced
pain management
pi k akt
cell proliferation