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10.1007/s00381-020-04708-1 http://scihub22266oqcxt.onion/10.1007/s00381-020-04708-1 32514759!7276654!32514759     free     free     free Warning: file_get_contents(https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=32514759&cmd=llinks): Failed to open stream: HTTP request failed! HTTP/1.1 429 Too Many Requests in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 215       Childs+Nerv+Syst 2020 ; 36 (10): 2279-2284 Nephropedia Template TP {{tp|p=32514759|t=2020. Role, function and challenges of multidisciplinary centres for rare diseases exemplified for neurofibromatosis type 1 syndrome |pdf=|usr=}}{{32514759}} gab.com Text Role, function and challenges of multidisciplinary centres for rare diseases exemplified for neurofibromatosis type 1 syndrome JO: Childs Nerv Syst http://www.kidney.de/pget.php?&tw=1&pmid=32514759 #FOAvip 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 team. METHODS: The authors reviewed the literature and supplied a description of their own clinical work at the NF1 centres. RESULTS: The experience of a multidisciplinary teamwork of three NF centres was summarized in order to enhance awareness for possible multidisciplinary ways of delivery of health and health-related aspects of care to NF1 patients. Both population-focused research centres and family-focused centres were reviewed. CONCLUSIONS: 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. Twit Text FOAVip Role, function and challenges of multidisciplinary centres for rare diseases exemplified for neurofibromatosis type 1 syndrome ????Childs Nerv Syst http://www.kidney.de/pget.php?&tw=1&pmid=32514759 #FOAvip Twit Text # Free Paper on # # # # # LINK http://www.kidney.de/pget.php?&tw=1&pmid=32514759 #FOAvip English Wikipedia <ref>{{Cite pmid|32514759}}</ref> Role, function and challenges of multidisciplinary centres for rare diseases exemplified for neurofibromatosis type 1 syndrome #MMPMID32514759 Toledano-Alhadef H; Mautner VF; Gugel I; Zipfel J; Haas-Lude K; Constantini S; Schuhmann MU Childs Nerv Syst 2020[Oct]; 36 (10): 2279-2284 PMID32514759show ga 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 team. METHODS: The authors reviewed the literature and supplied a description of their own clinical work at the NF1 centres. RESULTS: The experience of a multidisciplinary teamwork of three NF centres was summarized in order to enhance awareness for possible multidisciplinary ways of delivery of health and health-related aspects of care to NF1 patients. Both population-focused research centres and family-focused centres were reviewed. CONCLUSIONS: 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. |*Neurofibromatosis 1/therapy[MESH] |*Rare Diseases/therapy[MESH] |Child[MESH]Role, function and challenges of multidisciplinary centres for rare di(epmc).pdf DeepDyve Pubget Overpricing