{"id":21288,"date":"2022-12-14T18:48:48","date_gmt":"2022-12-14T18:48:48","guid":{"rendered":"https:\/\/site-euspringworks-live-1721707192-jq9cikhfcu2uwhr.local\/accueil\/"},"modified":"2026-03-12T14:15:41","modified_gmt":"2026-03-12T14:15:41","slug":"accueil","status":"publish","type":"page","link":"https:\/\/www.nf1pn.eu\/fr\/","title":{"rendered":"Accueil"},"content":{"rendered":"\t\t
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FOCUS SUR<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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LA NEUROFIBROMATOSE DE TYPE 1 AVEC NEUROFIBROMES PLEXIFORMES<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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(NF1-PN)<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Inscrivez-vous sur notre plateforme d\u2019experts pour vous tenir au courant des avanc\u00e9es scientifiques dans le diagnostic, l\u2019\u00e9valuation clinique et le traitement de la NF1-PN.<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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\"\"<\/a><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\u00c0 propos de la NF1-PN<\/a><\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Une affection souvent invalidante et qui, dans de nombreux cas, change la vie n\u00e9cessitant un diagnostic pr\u00e9coce, une surveillance continue et une prise en charge multidisciplinaire \u00e0 vie1, 2<\/sup>.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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En savoir plus<\/a><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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<\/path><\/svg><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<\/a><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Fardeau de la maladie et besoins non satisfaits<\/a><\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\tJusqu\u2019\u00e0 50\u00a0% des personnes atteintes de NF1 d\u00e9veloppent des neurofibromes plexiformes, ce qui peut entra\u00eener des difficult\u00e9s physiques, psychologiques et cognitives2\u20134<\/sup>, ainsi qu\u2019une alt\u00e9ration de la qualit\u00e9 de vie.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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En savoir plus<\/a><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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<\/path><\/svg><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<\/a><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Diagnostic et prise en charge<\/a><\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Les recommandations cliniques recommandent que le traitement de la NF1 soit r\u00e9alis\u00e9 \u00e0 l\u2019aide d\u2019une approche multidisciplinaire (AMD) avec des sp\u00e9cialistes ayant une exp\u00e9rience dans le traitement du NP associ\u00e9 \u00e0 la NF1 ainsi qu\u2019une alt\u00e9ration de la qualit\u00e9 de vie1, 5<\/sup>.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Afficher les recommandations<\/a><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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\n\n\t\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tR\u00e9f\u00e9rences<\/a>\n\t\t\t\t\t<\/h5>\n\t\t\t\t\t
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  1. Carton C et al. ERN GENTURIS tumour surveillance guidelines for individuals with neurofibromatosis type 1. eClinicalMedicine<\/em>. 2023;56:101818.<\/li>\n
  2. Ejerskov C, Farholt S, Nielsen FSK, et al. Clinical characteristics and management of children and adults with neurofibromatosis type 1 and plexiform neurofibromas in Denmark: a nationwide study. Oncol Ther<\/em>. 2023;11(1):97\u2013110.<\/li>\n
  3. Miller DT, Freedenberg D, Schorry E, Ullrich NJ, Viskochil D, Korf BR; Council on Genetics; American College of Medical Genetics and Genomics. Health supervision for children with neurofibromatosis type 1. Pediatrics<\/em>. 2019;143(5):e20190660.<\/li>\n
  4. Darrigo LG Jr, Ferraz VEF, Cormedi MCV, et al. Epidemiological profile and clinical characteristics of 491 Brazilian patients with neurofibromatosis type 1. Brain Behav.<\/em> 2022;12(6):e2599.<\/li>\n
  5. Farschtschi S, Vaassen P, Kluwe L, Hartung T, Salamon J, Rosenbaum T. Age adapted diagnostic evaluation and treatment of patients with neurofibromatosis type 1 in Germany. Dtsch Arztebl Int<\/em> 2025; 112(3)<\/li>\n<\/ol>\n<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

    FOCUS SUR LA NEUROFIBROMATOSE DE TYPE 1 AVEC NEUROFIBROMES PLEXIFORMES (NF1-PN) Inscrivez-vous sur notre plateforme d\u2019experts pour vous tenir au courant des avanc\u00e9es scientifiques dans le diagnostic, l\u2019\u00e9valuation clinique et le traitement de la NF1-PN. \u00c0 propos de la NF1-PN Une affection souvent invalidante et qui, dans de nombreux cas, change la vie n\u00e9cessitant un…<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":1,"comment_status":"closed","ping_status":"closed","template":"elementor_header_footer","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-21288","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nNF1-PN | SpringWorks Therapeutics<\/title>\n<meta name=\"description\" content=\"Ressource utile sur la nf1-pn pour les professionnels de sant\u00e9 (PS). 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