Role, function and challenges of multidisciplinary centres for rare diseases exemplified for neurofibromatosis type 1 syndrome
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DOI: 10.1007/s00381-020-04708-1
Abstract: 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… read more here.
Keywords: rare diseases; role function; neurofibromatosis type; function challenges ... See more keywords