{"id":4858,"date":"2023-05-09T18:04:13","date_gmt":"2023-05-09T18:04:13","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/?page_id=4858"},"modified":"2025-05-05T19:16:23","modified_gmt":"2025-05-05T19:16:23","slug":"nouvellement-diagnostique","status":"publish","type":"page","link":"https:\/\/www.rawoodfoundation.org\/fr\/newly-diagnosed\/","title":{"rendered":"Nouvellement diagnostiqu\u00e9"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Trouver la voie \u00e0 suivre<\/h2>\n\n\n\n<p>Si vous venez de recevoir un diagnostic de tumeur c\u00e9r\u00e9brale, comme le craniopharyngiome, ou si vous \u00eates un soignant, vous vous sentez probablement d\u00e9pass\u00e9 et effray\u00e9.<\/p>\n\n\n\n<p>Vous vous demandez peut-\u00eatre <strong>pourquoi et comment cela s'est produit<\/strong> \u00e0 vous ou \u00e0 un membre de votre famille.<\/p>\n\n\n\n<p>Vous pouvez \u00eatre <strong>\u00eatre confront\u00e9 \u00e0 un grand nombre de d\u00e9cisions pour trouver le meilleur traitement et le meilleur m\u00e9decin<\/strong>ou peut-\u00eatre que vous ou votre proche avez d\u00e9j\u00e0 subi le traitement pour enlever la tumeur et que vous vous demandez maintenant ce qu'il va se passer ?<\/p>\n\n\n\n<p>Vous \u00eates <strong>s'inqui\u00e8te de ce que cela signifie d'avoir cette tumeur c\u00e9r\u00e9brale<\/strong> et ce qu'il adviendra de votre sant\u00e9 et de votre vie ou de celles de votre proche \u00e0 la suite de ce diagnostic.<\/p>\n\n\n\n<p><strong>Nous sommes d\u00e9sol\u00e9s d'apprendre que vous \u00eates maintenant atteint d'une tumeur c\u00e9r\u00e9brale ou que vous \u00eates un membre de votre famille. <\/strong>mais nous voulons que vous sachiez que vous n'\u00eates PAS seul.<\/p>\n\n\n\n<p>\u00c0 la Fondation Raymond A. Wood, nous comprenons, car nous avons march\u00e9 \u00e0 votre place. Fond\u00e9e par les parents d'un gar\u00e7on atteint d'un craniopharyngiome, nous sommes une organisation de d\u00e9fense des int\u00e9r\u00eats des survivants des tumeurs hypothalamo-hypophysaires et des personnes atteintes d'un cancer du sein. <strong>nous sommes l\u00e0 pour vous<\/strong>.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<h2 class=\"wp-block-heading\">Pr\u00e9sentation de la Raymond A. Wood Foundation (RAWF)<\/h2>\n\n\n\n<p class=\"gb-headline gb-headline-f07515ca round-icon\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewbox=\"0 0 256 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M224.3 273l-136 136c-9.4 9.4-24.6 9.4-33.9 0l-22.6-22.6c-9.4-9.4-9.4-24.6 0-33.9l96.4-96.4-96.4-96.4c-9.4-9.4-9.4-24.6 0-33.9L54.3 103c9.4-9.4 24.6-9.4 33.9 0l136 136c9.5 9.4 9.5 24.6.1 34z\"><\/path><\/svg><\/span><span class=\"gb-headline-text\"><a href=\"\/fr\/mission-vision\/\">En savoir plus sur nous<\/a><\/span><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<p>En tant qu'organisation de d\u00e9fense des patients, la mission de RAWF est de permettre aux survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires d'am\u00e9liorer leur qualit\u00e9 de vie en leur donnant acc\u00e8s \u00e0 l'\u00e9ducation, \u00e0 la technologie et \u00e0 des traitements \u00e9volutifs.<\/p>\n\n\n\n<p>En tant qu'organisation de d\u00e9fense des maladies rares, RAWF travaille avec la FDA, d'autres organisations alli\u00e9es et des soci\u00e9t\u00e9s pharmaceutiques et d'appareils m\u00e9dicaux au nom de la communaut\u00e9 des survivants des tumeurs c\u00e9r\u00e9brales.<\/p>\n\n\n\n<p class=\"gb-headline gb-headline-cd0c0e1a gb-headline-text\">RAWF est fi\u00e8re d'\u00eatre subventionn\u00e9e par la <a href=\"https:\/\/chanzuckerberg.com\/science\/programs-resources\/rare-as-one\/\" target=\"_blank\" rel=\"noreferrer noopener\">Initiative Chan Zuckerberg Projet Rare as One<\/a> et utilise les ressources de cette opportunit\u00e9 pour cr\u00e9er un r\u00e9seau de recherche afin d'aborder les conditions les plus mal comprises et les plus difficiles \u00e0 traiter chez les survivants du craniopharyngiome, ainsi que pour r\u00e9pondre aux besoins de la population la plus mal desservie de nos survivants.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"La Raymond A. Wood Foundation est une organisation de d\u00e9fense des patients atteints de maladies rares, dirig\u00e9e par des parents.\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/zgXSFWoGRJs?feature=oembed&#038;enablejsapi=1&#038;origin=https:\/\/www.rawoodfoundation.org\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\">Ressources pour les patients nouvellement diagnostiqu\u00e9s et leur famille<\/h3>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><div class=\"gb-container gb-container-a83858ef clickable-container\">\n\n<h5 class=\"gb-headline gb-headline-83ff5696 round-icon\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewbox=\"0 0 256 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M224.3 273l-136 136c-9.4 9.4-24.6 9.4-33.9 0l-22.6-22.6c-9.4-9.4-9.4-24.6 0-33.9l96.4-96.4-96.4-96.4c-9.4-9.4-9.4-24.6 0-33.9L54.3 103c9.4-9.4 24.6-9.4 33.9 0l136 136c9.5 9.4 9.5 24.6.1 34z\"><\/path><\/svg><\/span><span class=\"gb-headline-text\"><a href=\"https:\/\/live-rawf.pantheonsite.io\/disease-information\/\">Informations sur les maladies<\/a><\/span><\/h5>\n\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><div class=\"gb-container gb-container-c65b9708 clickable-container\">\n\n<h5 class=\"gb-headline gb-headline-2aee17b1 round-icon\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewbox=\"0 0 256 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M224.3 273l-136 136c-9.4 9.4-24.6 9.4-33.9 0l-22.6-22.6c-9.4-9.4-9.4-24.6 0-33.9l96.4-96.4-96.4-96.4c-9.4-9.4-9.4-24.6 0-33.9L54.3 103c9.4-9.4 24.6-9.4 33.9 0l136 136c9.5 9.4 9.5 24.6.1 34z\"><\/path><\/svg><\/span><span class=\"gb-headline-text\"><a href=\"https:\/\/live-rawf.pantheonsite.io\/events\/\">Ev\u00e9nements<\/a><\/span><\/h5>\n\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><div class=\"gb-container gb-container-3430f7bc clickable-container\"><a class=\"gb-container-link\" href=\"\/fr\/recherche-de-medecins\/\" aria-label=\"Recherche de m\u00e9decins\"><\/a>\n\n<h5 class=\"gb-headline gb-headline-fa56953d round-icon\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewbox=\"0 0 256 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M224.3 273l-136 136c-9.4 9.4-24.6 9.4-33.9 0l-22.6-22.6c-9.4-9.4-9.4-24.6 0-33.9l96.4-96.4-96.4-96.4c-9.4-9.4-9.4-24.6 0-33.9L54.3 103c9.4-9.4 24.6-9.4 33.9 0l136 136c9.5 9.4 9.5 24.6.1 34z\"><\/path><\/svg><\/span><span class=\"gb-headline-text\"><a href=\"https:\/\/live-rawf.pantheonsite.io\/physician-finder\/\">Recherche de m\u00e9decins<\/a><\/span><\/h5>\n\n<\/div><\/div>\n<\/div>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h3 class=\"wp-block-heading\">S'abonner \u00e0 notre cha\u00eene YouTube <\/h3>\n\n\n\n<p>La RAWF dispose d'une <a href=\"https:\/\/www.youtube.com\/c\/RaymondAWoodFoundation\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Cha\u00eene YouTube<\/strong><\/a> avec des vid\u00e9os \u00e9ducatives. Vous pouvez vous abonner et avoir acc\u00e8s \u00e0 un contenu r\u00e9guli\u00e8rement mis \u00e0 jour.<\/p>\n\n\n\n<p>Pour d\u00e9couvrir d'autres offres de RAWF, consultez les programmes que nous proposons sur le site web \u00e0 la rubrique <a href=\"\/fr\/evenements\/\">Ev\u00e9nements<\/a>.<\/p>\n\n\n\n<p class=\"gb-headline gb-headline-9c0b6445 round-icon\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewbox=\"0 0 256 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M224.3 273l-136 136c-9.4 9.4-24.6 9.4-33.9 0l-22.6-22.6c-9.4-9.4-9.4-24.6 0-33.9l96.4-96.4-96.4-96.4c-9.4-9.4-9.4-24.6 0-33.9L54.3 103c9.4-9.4 24.6-9.4 33.9 0l136 136c9.5 9.4 9.5 24.6.1 34z\"><\/path><\/svg><\/span><span class=\"gb-headline-text\"><a href=\"https:\/\/www.youtube.com\/channel\/UCyM_PCQiJzcXwL9H6_gXHFQ?sub_confirmation=1\">S'abonner \u00e0 notre cha\u00eene YouTube<\/a><\/span><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Le paysage mol\u00e9culaire, inflammatoire et immunitaire du craniopharyngiome et les nouveaux moyens de le cibler\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/dgdQZqKntQg?feature=oembed&#038;enablejsapi=1&#038;origin=https:\/\/www.rawoodfoundation.org\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n<\/div>\n<\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\">Autres ressources<\/h3>\n\n\n\n<p>Il existe des ressources en ligne et des groupes de soutien pour les patients atteints de craniopharyngiome et les soignants. En voici quelques-uns :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><a href=\"https:\/\/www.facebook.com\/groups\/craniosurvivors\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Groupe Facebook pour le craniopharyngiome<\/strong><\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/rarediseases.org\/rare-diseases\/craniopharyngioma\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Organisation nationale des maladies rares : craniopharyngiome<\/strong><\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/rarediseases.info.nih.gov\/diseases\/10486\/craniopharyngioma\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Institut national de la sant\u00e9 : craniopharyngiome<\/strong><\/a><\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading has-text-align-center\">Nous contacter<\/h3>\n\n\n\n<p class=\"has-text-align-center\">Nous offrons des possibilit\u00e9s de mentorat aux nouvelles familles. N'h\u00e9sitez pas \u00e0 nous contacter et \u00e0 nous dire comment nous pouvons vous aider.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<script src=\"https:\/\/s3-us-west-2.amazonaws.com\/bloomerang-public-cdn\/raymondawoodfoundation\/.widget-js\/42207232.js\" type=\"text\/javascript\"><\/script>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:50%\">\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"509\" height=\"339\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/07\/help.jpg\" alt=\"Maman r\u00e9confortant sa fille\" class=\"wp-image-7538\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/help.jpg 509w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/help-300x200.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/help-18x12.jpg 18w\" sizes=\"(max-width: 509px) 100vw, 509px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:65px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>","protected":false},"excerpt":{"rendered":"<p>Trouver la voie \u00e0 suivre Si vous \u00eates un patient r\u00e9cemment diagnostiqu\u00e9 ou l'aidant d'un ... <a title=\"Nouvellement diagnostiqu\u00e9\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/newly-diagnosed\/\" aria-label=\"En savoir plus sur le nouveau diagnostic\">Lire plus<\/a><\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":106,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":{"0":"post-4858","1":"page","2":"type-page","3":"status-publish","5":"no-featured-image-padding"},"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Newly Diagnosed - Raymond A. 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