{"id":88,"date":"2020-11-16T18:21:12","date_gmt":"2020-11-16T18:21:12","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2020\/11\/16\/2020-11-16-pituitary-brain-tumor-virtual-conference-a-success\/"},"modified":"2025-10-14T07:37:50","modified_gmt":"2025-10-14T07:37:50","slug":"2020-11-16-la-conference-virtuelle-sur-les-tumeurs-cerebrales-hypophysaires-est-un-succes","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2020\/11\/16\/2020-11-16-pituitary-brain-tumor-virtual-conference-a-success\/","title":{"rendered":"Succ\u00e8s de la conf\u00e9rence virtuelle sur les tumeurs c\u00e9r\u00e9brales hypophysaires"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space: pre-wrap;\">Le week-end dernier, la Raymond A. Wood Foundation (RAWF), une organisation \u00e0 but non lucratif de d\u00e9fense des patients atteints de tumeurs c\u00e9r\u00e9brales, a organis\u00e9 la Pituitary Brain Tumor Virtual Conference en partenariat avec le Children's Hospital of Philadelphia (CHOP). L'\u00e9v\u00e9nement a rassembl\u00e9 un public de survivants de tumeurs c\u00e9r\u00e9brales et de soignants du monde entier.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">RAWF d\u00e9fend les int\u00e9r\u00eats des survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires. G\u00e9n\u00e9ralement b\u00e9nignes, ces tumeurs, y compris le craniopharyngiome, qualifi\u00e9 de \"plus redoutable des tumeurs intracr\u00e2niennes\" par Harvey Cushing, le p\u00e8re de la neurochirurgie moderne, sont rares et offrent un taux de survie \u00e9lev\u00e9. Cependant, en raison de leur localisation dans la partie centrale du cerveau, ces tumeurs et leurs traitements entra\u00eenent souvent une mauvaise qualit\u00e9 de vie pour les patients et une charge importante pour les soignants.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">En 2017, RAWF a \u00e9t\u00e9 fond\u00e9e en l'honneur d'Alex Wood, 10 ans, Ocean City, MD, qui, \u00e0 l'\u00e2ge de 4 ans, a \u00e9t\u00e9 soudainement diagnostiqu\u00e9 et a d\u00fb subir une ablation d'urgence d'un craniopharyngiome. Pour Alex, et de nombreux survivants comme lui, le traitement de la tumeur a entra\u00een\u00e9 de nombreuses maladies chroniques rares et difficiles \u00e0 g\u00e9rer. Rien que l'ann\u00e9e derni\u00e8re, il a \u00e9t\u00e9 hospitalis\u00e9 deux fois pour des complications li\u00e9es \u00e0 ces affections. La fondation a \u00e9t\u00e9 cr\u00e9\u00e9e pour fournir des appareils m\u00e9dicaux \u00e0 des patients comme Alex afin de g\u00e9rer le diab\u00e8te insipide, une maladie rare dans laquelle l'hypothalamus ne contr\u00f4le pas correctement l'\u00e9quilibre des fluides corporels, ce qui entra\u00eene des taux anormaux de sodium dans le sang. L'initiative de fournir ces appareils de qualit\u00e9 hospitali\u00e8re a \u00e9t\u00e9 initialement financ\u00e9e par un soutien local.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\"RAWF et les patients que nous d\u00e9fendons sont extr\u00eamement reconnaissants envers notre communaut\u00e9 locale\", a d\u00e9clar\u00e9 Amy Wood, directrice ex\u00e9cutive. \"Le soutien de nos amis, de nos voisins et des entreprises locales ici \u00e0 Ocean City a permis de lancer ce qui est en train de devenir une organisation mondiale, travaillant \u00e0 trouver des solutions pour les survivants enfants et adultes comme Alex, qui font face \u00e0 tant de d\u00e9fis.\"<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">La conf\u00e9rence virtuelle sur les tumeurs c\u00e9r\u00e9brales hypophysaires devait initialement avoir lieu en mai au CHOP, mais elle a \u00e9t\u00e9 d\u00e9plac\u00e9e sur la plateforme virtuelle en raison de la conf\u00e9rence COVID-19. Sans les barri\u00e8res g\u00e9ographiques, des patients des \u00c9tats-Unis, de Malaisie, des Pays-Bas, du Royaume-Uni, d'Australie et du Canada se sont joints en ligne aux pr\u00e9sentations des principaux cliniciens, chercheurs et experts du CHOP, de Seattle Children's, de Texas Children's, du Kennedy Krieger Institute, de l'h\u00f4pital universitaire de Bordeaux, en France, et de l'h\u00f4pital universitaire Rigshospitalet de Copenhague, au Danemark.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Parmi les sujets abord\u00e9s figurait l'ob\u00e9sit\u00e9 hypothalamique (HO), un effet secondaire d\u00e9vastateur de ces tumeurs, qui se traduit par une faim insatiable et une prise de poids rapide et incontr\u00f4lable qui ne r\u00e9pond pas aux r\u00e9gimes alimentaires et \u00e0 l'exercice physique. L'ob\u00e9sit\u00e9 hypothalamique peut conduire \u00e0 d'autres conditions m\u00e9dicales difficiles, notamment le diab\u00e8te de type 2 et la st\u00e9atose h\u00e9patique non alcoolique, tout en pr\u00e9sentant des d\u00e9fis quotidiens importants pour le patient et le personnel soignant.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\"Au cours de l'ann\u00e9e \u00e9coul\u00e9e, nous avons constat\u00e9 un r\u00e9el mouvement au sein de la communaut\u00e9 m\u00e9dicale pour trouver un traitement \u00e0 cette condition d\u00e9sesp\u00e9r\u00e9e et RAWF s'efforce de soutenir les chercheurs dans le d\u00e9veloppement de traitements\", a d\u00e9clar\u00e9 M. Wood. \"Nous travaillons \u00e9galement avec des neuro-oncologues pour trouver de meilleurs moyens de traiter ces tumeurs d\u00e8s le d\u00e9part afin d'\u00e9viter ce r\u00e9sultat final.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">La mission de la Raymond A. Wood Foundation 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. <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/faire-un-don\/\">Faites un don pour soutenir cette mission.<\/a><\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Nous remercions tout particuli\u00e8rement <a href=\"https:\/\/saniona.com\/\" target=\"_blank\" rel=\"noopener\">Saniona<\/a> et <a href=\"https:\/\/consynance.com\" target=\"_blank\" rel=\"noopener\">ConSynance Therapeutics<\/a> pour avoir parrain\u00e9 cet \u00e9v\u00e9nement et pour leur travail dans le d\u00e9veloppement de traitements prometteurs pour l'ob\u00e9sit\u00e9 hypothalamique.<\/p>\n<\/div>\n<div class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\" data-test=\"image-block-inline-outer-wrapper\"><\/p>\n<figure class=\"sqs-block-image-figure              intrinsic\" style=\"max-width: 2500px;\"><\/p>\n<div class=\"image-block-wrapper\" data-animation-role=\"image\">\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"position: relative; padding-bottom: 55.959999084472656%; overflow: hidden; -webkit-mask-image: -webkit-radial-gradient(white, black);\"><\/p>\n<p><noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1605550695771-FSSVZXTI90B1ISENOZSM\/photo1.png\" alt=\"Le Dr Christian Roth, du Seattle Children&#039;s Hospital, fait une pr\u00e9sentation sur l&#039;ob\u00e9sit\u00e9 hypothalamique lors de la conf\u00e9rence virtuelle sur les tumeurs hypophysaires organis\u00e9e par RAWF et CHOP.\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1605550695771-FSSVZXTI90B1ISENOZSM\/photo1.png\" alt=\"Le Dr Christian Roth, du Seattle Children&#039;s Hospital, fait une pr\u00e9sentation sur l&#039;ob\u00e9sit\u00e9 hypothalamique lors de la conf\u00e9rence virtuelle sur les tumeurs hypophysaires organis\u00e9e par RAWF et CHOP.\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1605550695771-FSSVZXTI90B1ISENOZSM\/photo1.png\" data-image-dimensions=\"2500x1399\" data-image-focal-point=\"0.5,0.5\" data-load=\"false\" data-image-id=\"5fb2c267c7b5bc0df6d194c9\" data-type=\"image\" \/><\/p>\n<\/div>\n<\/div><figcaption class=\"image-caption-wrapper\">\n<div class=\"image-caption\">\n<p class=\"\" style=\"white-space: pre-wrap;\">Le Dr Christian Roth, du Seattle Children's Hospital, fait une pr\u00e9sentation sur l'ob\u00e9sit\u00e9 hypothalamique lors de la conf\u00e9rence virtuelle sur les tumeurs hypophysaires organis\u00e9e par RAWF et CHOP.<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\">Le week-end dernier, la Raymond A. Wood Foundation (RAWF), une organisation \u00e0 but non lucratif de d\u00e9fense des patients atteints de tumeurs c\u00e9r\u00e9brales, a organis\u00e9 la Pituitary Brain Tumor Virtual Conference en partenariat avec le Children's Hospital of Philadelphia (CHOP). L'\u00e9v\u00e9nement a rassembl\u00e9 un public de survivants de tumeurs c\u00e9r\u00e9brales et de soignants du monde entier.<\/p>","protected":false},"author":6,"featured_media":89,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8,30,1],"tags":[],"class_list":["post-88","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-rawf-news","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","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>Pituitary Brain Tumor Virtual Conference A Success - Raymond A. Wood Foundation<\/title>\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.rawoodfoundation.org\/fr\/2020\/11\/16\/2020-11-16-la-conference-virtuelle-sur-les-tumeurs-cerebrales-hypophysaires-est-un-succes\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pituitary Brain Tumor Virtual Conference A Success - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"Last weekend, the Raymond A. Wood Foundation (RAWF), a brain tumor patient advocacy nonprofit organization, hosted the Pituitary Brain Tumor Virtual Conference in partnership with the Children\u2019s Hospital of Philadelphia (CHOP). The event brought in an audience of brain tumor survivors and caregivers from around the globe.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/fr\/2020\/11\/16\/2020-11-16-la-conference-virtuelle-sur-les-tumeurs-cerebrales-hypophysaires-est-un-succes\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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