{"id":119,"date":"2021-11-03T16:58:04","date_gmt":"2021-11-03T16:58:04","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2021\/11\/03\/rao-grantee\/"},"modified":"2021-11-03T16:58:04","modified_gmt":"2021-11-03T16:58:04","slug":"boursier-rao","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2021\/11\/03\/rao-grantee\/","title":{"rendered":"La Raymond A. Wood Foundation est nomm\u00e9e b\u00e9n\u00e9ficiaire d'une subvention dans le cadre de l'initiative Chan Zuckerberg Rare As One Network"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\"><em>Ocean City, MD <\/em>- Il a \u00e9t\u00e9 annonc\u00e9 aujourd'hui que la <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/\"><span style=\"text-decoration:underline\">Fondation Raymond A. Wood<\/span><\/a> (RAWF), une organisation de d\u00e9fense des maladies rares dirig\u00e9e par des patients et destin\u00e9e aux survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, a \u00e9t\u00e9 s\u00e9lectionn\u00e9e comme b\u00e9n\u00e9ficiaire d'une subvention dans le cadre du programme de recherche de l <a href=\"https:\/\/chanzuckerberg.com\/\"><span style=\"text-decoration:underline\">Initiative Chan Zuckerberg<\/span><\/a> (CZI) Rare As One Network, qui vise \u00e0 soutenir et \u00e0 renforcer le travail des communaut\u00e9s de patients pour faire progresser la lutte contre les maladies rares.&nbsp;<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Fond\u00e9e en 2017 pour donner aux survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires une meilleure qualit\u00e9 de vie en leur donnant acc\u00e8s \u00e0 l'\u00e9ducation, \u00e0 la technologie et \u00e0 des traitements en constante \u00e9volution, RAWF est l'une des 20 organisations qui rejoignent les 30 qui ont \u00e9t\u00e9 s\u00e9lectionn\u00e9es lors du premier cycle de cette initiative. La subvention de $600.000 accord\u00e9e sur une p\u00e9riode de trois ans aidera RAWF et les autres nouveaux b\u00e9n\u00e9ficiaires \u00e0 : 1) faire progresser le d\u00e9veloppement d'un r\u00e9seau international de recherche collaborative dirig\u00e9 par les patients dans leur domaine de pr\u00e9dilection, 2) renforcer leur capacit\u00e9 organisationnelle, 3) rassembler leurs communaut\u00e9s et 4) aligner les patients et les chercheurs sur des priorit\u00e9s communes.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Plus pr\u00e9cis\u00e9ment, RAWF cherche \u00e0 cr\u00e9er un collectif autour d'une tumeur c\u00e9r\u00e9brale rare, le craniopharyngiome. Cette tumeur, bien que b\u00e9nigne, peut se d\u00e9velopper et envahir des structures importantes (l'hypothalamus et l'hypophyse, qui sont \u00e9troitement li\u00e9s) situ\u00e9es au plus profond du cerveau et qui contr\u00f4lent une grande partie des fonctions de l'organisme. Harvey Cushing, le \"p\u00e8re de la neurochirurgie moderne\", a d'ailleurs d\u00e9clar\u00e9 qu'il s'agissait de \"la plus redoutable des tumeurs intracr\u00e2niennes\". Les retards de diagnostic compliquent encore le traitement, qui peut entra\u00eener un dysfonctionnement du syst\u00e8me endocrinien, des conditions m\u00e9dicales difficiles et des troubles cognitifs. La collaboration entre les patients, les chercheurs et les cliniciens est essentielle pour ouvrir la voie \u00e0 de meilleurs r\u00e9sultats th\u00e9rapeutiques et \u00e0 une gestion continue des soins.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\"><em>\"En tant que chercheur clinique et translationnel, le fait de pouvoir s'associer \u00e0 une organisation de d\u00e9fense des droits aussi forte que RAWF nous donne de bien meilleures chances de r\u00e9ussite\".<\/em> a d\u00e9clar\u00e9 le Dr Shana McCormack, neuroendocrinologue \u00e0 l'h\u00f4pital pour enfants de Philadelphie (CHOP) et membre de l'\u00e9quipe d'experts de la Commission europ\u00e9enne. <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/sab\/\"><span style=\"text-decoration:underline\">Conseil consultatif scientifique de RAWF<\/span><\/a>. <em>\"De plus, un r\u00e9seau de chercheurs multidisciplinaires garantit que nous continuerons \u00e0 faire avancer le domaine ensemble, et \u00e0 un rythme encore plus rapide. En tant que membre du r\u00e9seau CZI Rare As One, RAWF disposera de ressources encore plus pr\u00e9cieuses au service de son importante mission.\"<\/em><\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">La CZI reconna\u00eet que l'odyss\u00e9e du diagnostic est un d\u00e9fi pressant auquel sont confront\u00e9es les communaut\u00e9s de maladies rares qui cherchent \u00e0 construire des communaut\u00e9s fortes, diversifi\u00e9es et inclusives, ainsi qu'\u00e0 faire avancer la science vers le d\u00e9veloppement de traitements et de rem\u00e8des pour toutes les personnes touch\u00e9es par la maladie. Par cons\u00e9quent, ce deuxi\u00e8me cycle de financement a mis davantage l'accent sur la possibilit\u00e9 de relever les d\u00e9fis de la recherche li\u00e9e au diagnostic et sur l'importance de tenir compte de la diversit\u00e9 et de l'inclusion dans ces efforts.&nbsp;<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\"><em>\"Avoir l'honneur de faire partie du r\u00e9seau Rare As One n'aurait pas pu arriver \u00e0 un meilleur moment\". <\/em>dit <a href=\"https:\/\/www.linkedin.com\/in\/amymwood\/\"><span style=\"text-decoration:underline\">Amy Wood<\/span><\/a>Directeur ex\u00e9cutif de RAWF. <em>\"Cela nous permettra de d\u00e9velopper et de renforcer notre r\u00e9seau de patients et de chercheurs afin de trouver des solutions et d'atteindre les populations mal desservies qui pourraient probablement utiliser les ressources et le soutien que nous fournissons\".<\/em><\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Cori Bargmann, chef du service scientifique de la CZI, a ajout\u00e9 : \"...<em>Pour que la recherche biom\u00e9dicale sur les maladies rares progresse rapidement et efficacement, les patients doivent \u00eatre des partenaires \u00e0 part enti\u00e8re des scientifiques et des cliniciens. Nous sommes fiers d'\u00e9largir notre cohorte de b\u00e9n\u00e9ficiaires de Rare As One et de continuer \u00e0 soutenir l'\u00e9cosyst\u00e8me des maladies rares, alors que nous travaillons ensemble au diagnostic, au traitement et \u00e0 la gu\u00e9rison\". <\/em><a href=\"https:\/\/chanzuckerberg.com\/science\/programs-resources\/rare-as-one\/network\/\"><span style=\"text-decoration:underline\">Voir la liste compl\u00e8te des b\u00e9n\u00e9ficiaires.<\/span><\/a><\/p>\n<h2 style=\"white-space:pre-wrap;\"><strong>\u00c0 propos de la Fondation Raymond A. Wood&nbsp;<\/strong><\/h2>\n<p class=\"\" style=\"white-space:pre-wrap;\">La RAWF a \u00e9t\u00e9 fond\u00e9e par Shawn et Amy Wood apr\u00e8s que leur fils Alex a \u00e9t\u00e9 diagnostiqu\u00e9 \u00e0 l'\u00e2ge de quatre ans (onze ans aujourd'hui) avec une tumeur c\u00e9r\u00e9brale rare, le craniopharyngiome. L'op\u00e9ration d'urgence du cerveau pour traiter la tumeur a entra\u00een\u00e9 une s\u00e9rie d'autres conditions difficiles, dont les Woods ont rapidement appris qu'elles ne faisaient pas l'objet d'une recherche et d'un soutien ad\u00e9quats. RAWF continue de r\u00e9pondre aux besoins critiques et non satisfaits des survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires et de leurs familles en menant des projets tels que le d\u00e9veloppement d'un appareil de mesure du sodium \u00e0 domicile pour les survivants souffrant de diab\u00e8te insipide (DI), tout en offrant des opportunit\u00e9s d'\u00e9ducation, notamment une conf\u00e9rence annuelle sur le diab\u00e8te insipide (DI), organis\u00e9e par la RAWF.<a href=\"https:\/\/pituitarybraintumorconference.com\/\"><span style=\"text-decoration:underline\"> Conf\u00e9rence sur les tumeurs c\u00e9r\u00e9brales hypophysaires<\/span><\/a> en partenariat avec le CHOP. La RAWF s'efforce \u00e9galement de sensibiliser le public aux probl\u00e8mes que posent ces tumeurs c\u00e9r\u00e9brales tout au long de la vie - tout r\u00e9cemment en organisant une s\u00e9ance d'\u00e9coute des patients avec la FDA sur l'ob\u00e9sit\u00e9 hypothalamique, l'une des maladies rares qui peuvent r\u00e9sulter de ces tumeurs - afin d'ouvrir la voie \u00e0 l'innovation en mati\u00e8re de traitement.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\"><em>Ocean City, MD (3 novembre 2021) <\/em>- Il a \u00e9t\u00e9 annonc\u00e9 aujourd'hui que la <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/\"><span style=\"text-decoration:underline\">Fondation Raymond A. Wood<\/span><\/a> (RAWF), une organisation de d\u00e9fense des maladies rares dirig\u00e9e par des patients et destin\u00e9e aux survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, a \u00e9t\u00e9 s\u00e9lectionn\u00e9e comme b\u00e9n\u00e9ficiaire d'une subvention dans le cadre du programme de recherche de l <a href=\"https:\/\/chanzuckerberg.com\/\"><span style=\"text-decoration:underline\">Initiative Chan Zuckerberg<\/span><\/a> (CZI) Rare As One Network, qui vise \u00e0 soutenir et \u00e0 renforcer le travail des communaut\u00e9s de patients pour faire progresser la lutte contre les maladies rares.<\/p>","protected":false},"author":1,"featured_media":120,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-119","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","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>Raymond A. 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