{"id":21281,"date":"2024-08-07T10:14:05","date_gmt":"2024-08-07T10:14:05","guid":{"rendered":"https:\/\/site-euspringworks-live-1721707192-jq9cikhfcu2uwhr.local\/a-propos-des-tumeurs-desmoides\/"},"modified":"2026-01-07T14:38:25","modified_gmt":"2026-01-07T14:38:25","slug":"a-propos-des-tumeurs-desmoides","status":"publish","type":"page","link":"https:\/\/www.nf1pn.eu\/fr\/a-propos-des-tumeurs-desmoides\/","title":{"rendered":"\u00c0 propos de la NF1-PN"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"21281\" class=\"elementor elementor-21281 elementor-20245\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-521b2fc3 e-con-full e-flex e-con e-parent\" data-id=\"521b2fc3\" data-element_type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-2357cce4 e-flex e-con-boxed e-con e-child\" data-id=\"2357cce4\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-36583354 elementor-widget elementor-widget-spacer\" data-id=\"36583354\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\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<div class=\"elementor-element elementor-element-571ef721 e-con-full e-flex e-con e-child\" data-id=\"571ef721\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-6d221ad6 e-flex e-con-boxed e-con e-child\" data-id=\"6d221ad6\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-179f8f76 elementor-widget elementor-widget-heading\" data-id=\"179f8f76\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">\u00c0 propos de la NF1-PN<\/h1>\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<div class=\"elementor-element elementor-element-c93e5d1 e-con-full section e-flex e-con e-child\" data-id=\"c93e5d1\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-2c1b3e20 e-flex e-con-boxed e-con e-child\" data-id=\"2c1b3e20\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-7d0debbd e-con-full e-flex e-con e-child\" data-id=\"7d0debbd\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-9a223c1 elementor-widget-tablet__width-inherit elementor-widget elementor-widget-the7-heading\" data-id=\"9a223c1\" data-element_type=\"widget\" data-widget_type=\"the7-heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"the7-heading-title elementor-size-default\">\u00c0 propos de la NF1-PN : une affection pouvant \u00eatre invalidante et ayant un impact significatif sur la vie quotidienne<sup>1<\/sup><\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-476dd929 e-con-full e-flex e-con e-child\" data-id=\"476dd929\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-2498b0c0 no-link [12:16 PM] Giovanni Ferraioli bullet-custom   content-align-left icon-box-vertical-align-top icon-position-left icon-vertical-align-start elementor-widget elementor-widget-the7_icon_box_grid_widget\" data-id=\"2498b0c0\" data-element_type=\"widget\" data-widget_type=\"the7_icon_box_grid_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"the7-box-grid-wrapper the7-elementor-widget loading-effect-none the7_icon_box_grid_widget-2498b0c0\">\t\t\t<div class=\"dt-css-grid\">\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Une maladie g\u00e9n\u00e9tique\">\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"80\" height=\"81\" viewBox=\"0 0 80 81\" fill=\"none\"><path opacity=\"0.3\" d=\"M74.7367 5.64887C67.7218 -1.36603 56.3559 -1.36603 49.341 5.64887C46.6341 8.35585 44.9987 11.7084 44.3833 15.2072C44.366 15.289 44.3402 15.3449 44.323 15.4224C42.4595 25.1744 44.607 32.1764 32.303 44.4847C19.9946 56.7888 18.4152 53.5094 8.2888 56.8921L8.32323 56.9308C6.57595 57.4989 4.91906 58.4285 3.52899 59.8142C-1.17487 64.5224 -1.17487 72.1484 3.52899 76.8523C8.23715 81.5604 15.8632 81.5604 20.567 76.8523C21.9571 75.4622 22.8867 73.8053 23.4548 72.058L23.4935 72.0925C26.8761 61.9617 23.5968 60.3866 35.9008 48.0783C48.2049 35.7699 55.2112 37.9174 64.9632 36.0583C65.0449 36.0453 65.0966 36.0152 65.174 35.998C68.6772 35.3826 72.034 33.7429 74.7367 31.0359C81.7516 24.0253 81.7516 12.6552 74.7367 5.64026\" fill=\"#05C0DA\"><\/path><path d=\"M36.6668 56.9689L28.7567 57.9071L40.299 26.1895L44.5811 27.0071L36.6668 56.9689Z\" fill=\"white\"><\/path><path d=\"M18.8455 49.9626C14.4644 48.0862 9.34742 49.9626 5.9906 53.3237\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M56.6873 33.7422C67.0159 37.7747 72.0038 32.8428 72.0038 32.8428\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M29.9488 60.4506C29.497 58.4753 28.5631 56.3923 27.0611 54.2018C16.1256 38.3128 22.5595 31.8574 25.486 28.9051C29.0107 25.3847 35.0228 24.9888 40.9704 27.0373\" fill=\"white\"><\/path><path d=\"M29.9488 60.4506C29.497 58.4753 28.5631 56.3923 27.0611 54.2018C16.1256 38.3128 22.5595 31.8574 25.486 28.9051C29.0107 25.3847 35.0228 24.9888 40.9704 27.0373\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M25.7357 73.0684C29.2044 69.5954 31.0679 65.3606 29.949 60.4502\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M43.8195 17.3926C44.1724 21.339 45.8163 25.6426 48.4717 29.4987C59.4072 45.3876 52.9733 51.8431 50.0468 54.7953C46.5221 58.3157 40.51 58.7116 34.5624 56.6631\" fill=\"white\"><\/path><path d=\"M43.8195 17.3926C44.1724 21.339 45.8163 25.6426 48.4717 29.4987C59.4072 45.3876 52.9733 51.8431 50.0468 54.7953C46.5221 58.3157 40.51 58.7116 34.5624 56.6631\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M46.776 7.61523C44.3703 10.021 43.4751 13.537 43.8194 17.3974\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M30.5557 34.6465L44.9728 49.0593\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M52.1814 13.0205L66.5985 27.4376\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M52.1814 22.0322L57.5867 27.4376\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M10.2253 57.5586L22.4907 69.8239\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M17.9418 56.2676L23.3514 61.6729\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M37.7642 32.8428L46.7759 41.8502\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><path d=\"M28.7567 41.8506L37.7642 50.8624\" stroke=\"#005EA7\" stroke-width=\"1.51487\" stroke-miterlimit=\"10\"><\/path><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Une maladie g\u00e9n\u00e9tique\">\t\t\t\t\t\t\t\t\t\t\t\tUne maladie g\u00e9n\u00e9tique\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-description\"><p>La <strong>neurofibromatose de type 1 (NF1)<\/strong> est un trouble g\u00e9n\u00e9tique dont la pr\u00e9valence minimale estim\u00e9e chez les enfants et les adultes est de <strong>1 sur 3\u00a0000 \u00e0 4\u00a0000 dans le monde<\/strong> et est caus\u00e9e par un variant pathog\u00e8ne du <strong>g\u00e8ne suppresseur de tumeur NF1<\/strong><sup>2<\/sup>.<br\/>\n<strong>La NF1 est la plus pr\u00e9valente des syndromes de neurofibromatose connus<\/strong>, un groupe de troubles g\u00e9n\u00e9tiques qui sont associ\u00e9s au d\u00e9veloppement de tumeurs sur les tissus nerveux<sup>3<\/sup>.<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-52d92a1 e-con-full e-flex e-con e-child\" data-id=\"52d92a1\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-44ebe880 elementor-widget elementor-widget-text-editor\" data-id=\"44ebe880\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong>30 \u00e0 50\u00a0%<\/strong> des enfants et des adultes atteints de NF1 <strong>d\u00e9veloppent des NP<sup>1, 5<\/sup><\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-33330b23 e-con-full e-flex e-con e-child\" data-id=\"33330b23\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-57998d89 no-link [12:16 PM] Giovanni Ferraioli bullet-custom   content-align-left icon-box-vertical-align-top icon-position-left icon-vertical-align-start elementor-widget elementor-widget-the7_icon_box_grid_widget\" data-id=\"57998d89\" data-element_type=\"widget\" data-widget_type=\"the7_icon_box_grid_widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"the7-box-grid-wrapper the7-elementor-widget loading-effect-none the7_icon_box_grid_widget-57998d89\">\t\t\t<div class=\"dt-css-grid\">\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Manifestations cliniques et impact\">\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"80\" height=\"81\" viewBox=\"0 0 80 81\" fill=\"none\"><mask id=\"mask0_2093_565\" style=\"mask-type:luminance\" maskUnits=\"userSpaceOnUse\" x=\"0\" y=\"0\" width=\"80\" height=\"81\"><path d=\"M79.8908 0.389648H0.000366211V80.2801H79.8908V0.389648Z\" fill=\"white\"><\/path><\/mask><g mask=\"url(#mask0_2093_565)\"><path opacity=\"0.3\" d=\"M74.5523 5.63799C67.5546 -1.3598 56.2168 -1.3598 49.2191 5.63799C46.5186 8.33836 44.8873 11.6827 44.2734 15.173C44.2563 15.2546 44.2305 15.3104 44.2132 15.3877C42.3544 25.1158 44.4967 32.1008 32.2228 44.3791C19.9446 56.6532 18.3691 53.3818 8.26749 56.7561L8.30183 56.7948C6.55884 57.3614 4.90602 58.2889 3.51936 59.6712C-1.17296 64.3679 -1.17296 71.9753 3.51936 76.6675C8.21596 81.3644 15.8233 81.3644 20.5156 76.6675C21.9022 75.281 22.8296 73.6282 23.3962 71.8851L23.4349 71.9194C26.8093 61.8135 23.5379 60.2422 35.8118 47.9639C48.0857 35.6856 55.0746 37.8279 64.8027 35.9731C64.8843 35.9603 64.936 35.9302 65.0132 35.913C68.5077 35.2992 71.8563 33.6635 74.5523 30.963C81.55 23.9697 81.55 12.6272 74.5523 5.62941\" fill=\"#05C0DA\"><\/path><path d=\"M44.5001 49V74.5H39.5001L38.0001 58.5L37.0001 74.5H32.0001V49L33.5001 41L38.9905 36.1006L44.5001 49Z\" fill=\"white\"><\/path><path d=\"M38.1709 37.7822C36.0592 37.7822 32.2541 39.144 31.2135 39.6695C30.1729 40.1896 29.4998 40.6385 28.6784 41.7557C27.9848 42.6991 26.8219 44.2295 26.0312 45.9025C25.3069 47.4377 26.5565 49.1618 28.2397 48.9577L37.0946 48.014\" fill=\"white\"><\/path><path d=\"M38.1708 37.7822C40.2825 37.7822 44.0876 39.144 45.128 39.6695C46.1686 40.1896 46.8419 40.6385 47.663 41.7557C48.3567 42.6991 49.5198 44.2295 50.3104 45.9025C51.0346 47.4377 49.7849 49.1618 48.1018 48.9577L40.4303 48.1417\" fill=\"white\"><\/path><path d=\"M38.171 37.7815C40.6396 37.7815 42.481 35.7156 42.481 33.1652V31.6248C42.481 29.0746 40.6396 27.0088 38.171 27.0088C35.7022 27.0088 33.861 29.0746 33.861 31.6248V33.1652C33.861 35.7156 35.7022 37.7815 38.171 37.7815Z\" fill=\"white\"><\/path><path d=\"M38.1709 37.7822C36.0592 37.7822 32.2541 39.144 31.2135 39.6695C30.1729 40.1896 29.4998 40.6385 28.6784 41.7557C27.9848 42.6991 26.8219 44.2295 26.0312 45.9025C25.3069 47.4377 26.5565 49.1618 28.2397 48.9577L37.0946 48.014\" stroke=\"#005EA7\" stroke-width=\"1.51222\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M38.1708 37.7822C40.2825 37.7822 44.0876 39.144 45.128 39.6695C46.1686 40.1896 46.8419 40.6385 47.663 41.7557C48.3567 42.6991 49.5198 44.2295 50.3104 45.9025C51.0346 47.4377 49.7849 49.1618 48.1018 48.9577L40.4303 48.1417\" stroke=\"#005EA7\" stroke-width=\"1.51222\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M38.171 37.7815C40.6396 37.7815 42.481 35.7156 42.481 33.1652V31.6248C42.481 29.0746 40.6396 27.0088 38.171 27.0088C35.7022 27.0088 33.861 29.0746 33.861 31.6248V33.1652C33.861 35.7156 35.7022 37.7815 38.171 37.7815Z\" stroke=\"#005EA7\" stroke-width=\"1.51222\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M31.7081 74.4047V48.9727\" stroke=\"#005EA7\" stroke-width=\"1.51222\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M37.0946 74.4049L38.1709 58.2461\" stroke=\"#005EA7\" stroke-width=\"1.51222\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M44.6334 74.4045V49.5488\" stroke=\"#005EA7\" stroke-width=\"1.51222\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M39.2469 74.4049L38.1708 58.2461\" stroke=\"#005EA7\" stroke-width=\"1.51222\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M29.0137 22.3351H47.7014C52.9165 22.3351 52.5363 15.2388 47.7014 15.1442C49.3477 12.6427 46.7292 9.68558 43.994 9.24287C39.8935 8.57665 37.3572 12.5739 37.3572 12.5739C37.3572 12.5739 33.4771 9.93059 30.8457 10.9793C27.389 12.359 28.668 15.8405 28.668 15.8405C28.668 15.8405 24.5892 15.1142 23.686 18.0713C22.7831 21.0283 26.2959 22.3351 29.0049 22.3351H29.0137Z\" fill=\"#005EA7\"><\/path><\/g><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Manifestations cliniques et impact\">\t\t\t\t\t\t\t\t\t\t\t\tManifestations cliniques et impact\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-description\"><p><strong>Les troubles cliniques fr\u00e9quents li\u00e9s \u00e0 la maladie<\/strong> de la NF1 <strong>sont les neurofibromes plexiformes (NP)<\/strong>, un type de <strong>tumeur de la gaine des nerfs p\u00e9riph\u00e9riques<\/strong> qui peut \u00eatre hautement invasive<sup>1<\/sup>.<br\/>Les NP entra\u00eenent souvent des <strong>troubles invalidants li\u00e9s \u00e0 la maladie<\/strong>, notamment une douleur chronique, une d\u00e9figuration, une compression des organes internes, une alt\u00e9ration de\nla fonction physique et une qualit\u00e9 de vie (QdV) r\u00e9duite pour les patients<sup>4<\/sup>.<\/p><\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Risque possible de transformation maligne\">\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"80\" height=\"81\" viewBox=\"0 0 80 81\" fill=\"none\"><mask id=\"mask0_2093_421\" style=\"mask-type:luminance\" maskUnits=\"userSpaceOnUse\" x=\"0\" y=\"0\" width=\"80\" height=\"81\"><path d=\"M80 0.389648H0V80.3896H80V0.389648Z\" fill=\"white\"><\/path><\/mask><g mask=\"url(#mask0_2093_421)\"><mask id=\"mask1_2093_421\" style=\"mask-type:luminance\" maskUnits=\"userSpaceOnUse\" x=\"0\" y=\"0\" width=\"80\" height=\"81\"><path d=\"M79.9527 0.389648H0V80.3423H79.9527V0.389648Z\" fill=\"white\"><\/path><\/mask><g mask=\"url(#mask1_2093_421)\"><path opacity=\"0.3\" d=\"M74.6925 5.64576C67.6818 -1.36499 56.3226 -1.36499 49.3119 5.64576C46.6065 8.35114 44.9721 11.7017 44.357 15.1984C44.3398 15.2802 44.314 15.3361 44.2968 15.4135C42.4344 25.1597 44.5807 32.1576 32.2839 44.4587C19.9828 56.7554 18.4043 53.478 8.28388 56.8587L8.31829 56.8974C6.57205 57.4651 4.91614 58.3942 3.52691 59.7791C-1.17417 64.4845 -1.17417 72.106 3.52691 76.8071C8.23226 81.5124 15.8538 81.5124 20.5548 76.8071C21.9441 75.4178 22.8731 73.7619 23.4409 72.0157L23.4796 72.0501C26.8602 61.9253 23.5828 60.3511 35.8796 48.0501C48.1764 35.749 55.1785 37.8952 64.9248 36.0372C65.0065 36.0243 65.0581 35.9941 65.1355 35.9769C68.6366 35.3619 71.9914 33.7232 74.6925 31.0178C81.7033 24.0114 81.7033 12.6479 74.6925 5.63716\" fill=\"#05C0DA\"><\/path><path d=\"M36.8044 21.9687L15.5614 58.7601C14.1506 61.1988 15.9141 64.2526 18.7313 64.2526H61.2173C64.0345 64.2526 65.7979 61.2031 64.3872 58.7601L43.1441 21.9687C41.7334 19.53 38.2109 19.53 36.8044 21.9687Z\" fill=\"white\" stroke=\"#005EA7\" stroke-width=\"1.51398\" stroke-miterlimit=\"10\"><\/path><path d=\"M39.9742 30.5059V51.2198\" stroke=\"#005EA7\" stroke-width=\"2.58065\" stroke-miterlimit=\"10\"><\/path><path d=\"M39.9742 55.5684V58.7426\" stroke=\"#005EA7\" stroke-width=\"2.15914\" stroke-miterlimit=\"10\"><\/path><\/g><\/g><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Risque possible de transformation maligne\">\t\t\t\t\t\t\t\t\t\t\t\tRisque possible de transformation maligne\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-description\"><p>Une complication grave de la NF1 est la transformation maligne possible des NP en <strong>tumeurs malignes de la gaine des nerfs p\u00e9riph\u00e9riques (MPNST),<\/strong> rapport\u00e9e chez jusqu\u2019\u00e0 <strong>16 % des personnes<\/strong> atteintes de NF1<sup>6, 7<\/sup>.<br\/>\nLes MPNST pr\u00e9sentent des <strong>taux de survie \u00e0 5 ans<\/strong> compris entre <strong>14\u00a0%<sup>8<\/sup> et 50\u00a0%<sup>6<\/sup><\/strong>.<\/p><\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<div class=\"wf-cell shown\">\n\t\t\t\t\t\t<div class=\"the7-icon-box-grid\">\t\t\t\t\t\t\t<div class=\"box-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-icon-div\" aria-label=\"Besoins cliniques et prise en charge\">\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"80\" height=\"81\" viewBox=\"0 0 80 81\" fill=\"none\"><mask id=\"mask0_2226_186\" style=\"mask-type:luminance\" maskUnits=\"userSpaceOnUse\" x=\"0\" y=\"0\" width=\"80\" height=\"81\"><path d=\"M80 0.389648H0V80.3896H80V0.389648Z\" fill=\"white\"><\/path><\/mask><g mask=\"url(#mask0_2226_186)\"><mask id=\"mask1_2226_186\" style=\"mask-type:luminance\" maskUnits=\"userSpaceOnUse\" x=\"0\" y=\"0\" width=\"80\" height=\"81\"><path d=\"M79.9527 0.389648H0V80.3423H79.9527V0.389648Z\" fill=\"white\"><\/path><\/mask><g mask=\"url(#mask1_2226_186)\"><path opacity=\"0.3\" d=\"M74.6925 5.64576C67.6818 -1.36499 56.3226 -1.36499 49.3119 5.64576C46.6065 8.35114 44.9721 11.7017 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29.3145 45.1682 29.3145H35.0333H32.2208L29.581 33.4364L26.9411 29.3145H24.1287H22.7692C21.1867 29.3145 19.8992 30.6112 19.8992 32.2049V44.5708C19.8992 46.2297 20.863 48.1929 24.1287 48.1929\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M25.8478 21.665C25.8478 23.7441 27.5237 25.4248 29.581 25.4248C31.6382 25.4248 33.3141 23.7369 33.3141 21.665C33.3141 19.5932 31.6382 17.9053 29.581 17.9053C27.5237 17.9053 25.8478 19.5932 25.8478 21.665Z\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M29.5809 63.4498V46.875\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M46.7147 25.4326V21.0498H55.8355\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M58.2092 30.0684V33.4224H51.3326\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M50.1025 25.9173L53.4904 29.3293L60.1008 22.6719\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M58.2092 44.6006V47.9474H46.7147V38.7617\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M50.1025 40.4499L53.4904 43.862L60.1008 37.1973\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M58.2092 59.9224V63.2693H46.7147V53.2939\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><path d=\"M50.1025 55.7708L53.4904 59.1828L60.1008 52.5254\" stroke=\"#005EA7\" stroke-width=\"1.51\" stroke-linecap=\"round\" stroke-linejoin=\"round\"><\/path><\/g><\/g><\/g><defs><clipPath id=\"clip0_2226_186\"><rect width=\"42\" height=\"49\" fill=\"white\" transform=\"translate(19 17)\"><\/rect><\/clipPath><\/defs><\/svg>\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-content\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<h5 class=\"box-heading\">\n\t\t\t\t\t\t\t\t\t\t\t<a aria-label=\"Besoins cliniques et prise en charge\">\t\t\t\t\t\t\t\t\t\t\t\tBesoins cliniques et prise en charge\t\t\t\t\t\t\t\t\t\t\t<\/a>\t\t\t\t\t\t\t\t\t\t<\/h5>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"box-description\">\u00c9tant donn\u00e9 la <b>nature invalidante et, dans de nombreux cas, bouleversante<\/b><sup>1<\/sup> de la NF1-PN, il existe un besoin crucial de <b>diagnostic pr\u00e9coce, d\u2019\u00e9valuation et de surveillance cliniques r\u00e9guli\u00e8res<\/b> et <b>de prise en charge multidisciplinaire \u00e0 long terme<\/b><sup>9<\/sup>.<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\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\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-4b491227 e-con-full e-flex e-con e-child\" data-id=\"4b491227\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-6a87acc4 e-flex e-con-boxed e-con e-child\" data-id=\"6a87acc4\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-452f9439 e-con-full e-flex e-con e-child\" data-id=\"452f9439\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-369b97ba elementor-widget elementor-widget-the7-accordion\" data-id=\"369b97ba\" data-element_type=\"widget\" data-widget_type=\"the7-accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion the7-adv-accordion\" data-accordion-type=\"accordion\" role=\"tablist\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<h5 id=\"elementor-tab-title-9161\" class=\"elementor-tab-title the7-accordion-header deactive-default\" data-tab=\"1\" role=\"tab\" aria-controls=\"elementor-tab-content-9161\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-plus\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H272V64c0-17.67-14.33-32-32-32h-32c-17.67 0-32 14.33-32 32v144H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h144v144c0 17.67 14.33 32 32 32h32c17.67 0 32-14.33 32-32V304h144c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/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\t<a class=\"elementor-accordion-title\" href=\"\">R\u00e9f\u00e9rences<\/a>\n\t\t\t\t\t<\/h5>\n\t\t\t\t\t<div id=\"elementor-tab-content-9161\" class=\"elementor-tab-content elementor-clearfix deactive-default\" data-tab=\"1\" role=\"tabpanel\" aria-labelledby=\"elementor-tab-title-9161\"><ol>\n<li>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. <em>Oncol Ther<\/em>. 2023;11(1):97\u2013110.<\/li>\n<li>Lee T-SJ, Chopra M, Kim RH, Parkin PC, Barnett-Tapia C. Incidence and prevalence of neurofibromatosis type 1 and 2: a systematic review and meta-analysis. <em>Orphanet J Rare Dis.<\/em> 2023;18(1):292.<\/li>\n<li>Tamura R. Current understanding of neurofibromatosis type 1, 2, and schwannomatosis.\u00a0Int J Mol Sci. 2021;22(11):5850.<\/li>\n<li>Copley-Merriman C, Yang X, Juniper M, et al. Natural History and Disease Burden of Neurofibromatosis Type 1 with Plexiform Neurofibromas: A Systematic Literature Review. <i>Adolesc Health Med Ther<\/i>. 2021;12:55\u201366.<\/li>\n<li>Darrigo LG Jr, Ferraz VEF, Cormedi MCV, et al. Epidemiological profile and clinical characteristics of 491 Brazilian patients with neurofibromatosis type 1. <i>Brain Behav<\/i>. 2022;12(6):e2599.<\/li>\n<li>Higham CS, Dombi E, Rogiers A, et al. The characteristics of 76 atypical neurofibromas as precursors to neurofibromatosis 1 associated malignant peripheral nerve sheath tumors. <i>Neuro Oncol<\/i>. 2018;20(6):818\u2013825.<\/li>\n<li>Miettinen MM, Antonescu CR, Fletcher CDM, et al. Histopathologic evaluation of atypical neurofibromatous tumors and their transformation into malignant peripheral nerve sheath tumor in patients with neurofibromatosis 1\u2014a consensus overview. <i>Hum Pathol<\/i>. 2017;67:1\u201310.<\/li>\n<li>Zehou O, Fabre E, Zelek L, et al. Chemotherapy for the treatment of malignant peripheral nerve sheath tumors in neurofibromatosis 1: a 10-year institutional review. <i>Orphanet J Rare Dis<\/i>. 2013;8:127.<\/li>\n<li>Carton C et al. ERN GENTURIS tumour surveillance guidelines for individuals with neurofibromatosis type 1. <i>eClinicalMedicine<\/i>. 2023;56:101818.<\/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<\/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\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>\u00c0 propos de la NF1-PN \u00c0 propos de la NF1-PN : une affection pouvant \u00eatre invalidante et ayant un impact significatif sur la vie quotidienne1 Une maladie g\u00e9n\u00e9tique La neurofibromatose de type 1 (NF1) est un trouble g\u00e9n\u00e9tique dont la pr\u00e9valence minimale estim\u00e9e chez les enfants et les adultes est de 1 sur 3\u00a0000 \u00e0&hellip;<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":5,"comment_status":"closed","ping_status":"closed","template":"elementor_header_footer","meta":{"_acf_changed":true,"footnotes":""},"class_list":["post-21281","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.1.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>NF1-PN\u00a0: \u00c0 propos de la NF1-PN | SpringWorks Therapeutics<\/title>\n<meta name=\"description\" content=\"Pr\u00e9sentation de la maladie\u00a0: D\u00e9couvrez l\u2019\u00e9tiologie, la pathogen\u00e8se et les principes de prise en charge de la nf1pn.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.nf1pn.eu\/fr\/a-propos-des-tumeurs-desmoides\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta 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