{"id":150163,"date":"2022-12-29T10:07:58","date_gmt":"2022-12-29T17:07:58","guid":{"rendered":"https:\/\/www.globaldownsyndrome.org\/?p=150163"},"modified":"2026-06-30T14:33:30","modified_gmt":"2026-06-30T20:33:30","slug":"nouvelle-ressource-sur-le-syndrome-de-down-disponible-en-espagnol-et-en-japonais","status":"publish","type":"post","link":"https:\/\/www.globaldownsyndrome.org\/fr\/new-down-syndrome-resource-available-in-spanish-and-japanese\/","title":{"rendered":"Nouvelle ressource sur le syndrome de Down disponible en espagnol et en japonais"},"content":{"rendered":"

Fondation mondiale du syndrome de Down, Centro UC S\u00ed<\/em>e syndrome de Down et l'association japonaise du syndrome de Down s'associent pour traduire et fournir un acc\u00e8s en ligne aux lignes directrices mondiales pour les adultes.<\/em><\/p>\n

Denver <\/strong>-29 d\u00e9cembre 2022<\/strong>- Aujourd'hui, Fondation mondiale du syndrome de Down (GLOBAL)<\/a>En collaboration avec le Centro de la Universidad Cat\u00f3lica de S\u00edndrome de Down au Chili (Centro UC S\u00edndrome de Down ou CUSD) et la Japan Down Syndrome Association (JDSA), la Commission europ\u00e9enne a publi\u00e9 une version espagnole et japonaise des lignes directrices GLOBAL Medical Care Guidelines for Adults with Down Syndrome (\"Lignes directrices GLOBAL pour les adultes atteints du syndrome de Down\").<\/p>\n

La ligne directrice GLOBAL pour les adultes est la premi\u00e8re ligne directrice fond\u00e9e sur des donn\u00e9es probantes pour les adultes atteints du syndrome de Down. JAMA<\/em><\/a>, le Journal de l'Association m\u00e9dicale am\u00e9ricaine<\/em>en 2020. Les auteurs des lignes directrices<\/a> Les neuf th\u00e8mes m\u00e9dicaux actuels sont : le comportement, la d\u00e9mence, le diab\u00e8te, les maladies cardiovasculaires, l'ob\u00e9sit\u00e9, l'ost\u00e9oporose, l'instabilit\u00e9 atlanto-axiale, les maladies thyro\u00efdiennes et la maladie c\u0153liaque. GLOBAL s'efforce d'\u00e9tendre les th\u00e8mes \u00e0 l'apn\u00e9e du sommeil, aux tumeurs solides, \u00e0 la leuc\u00e9mie, \u00e0 la vision et aux soins oculaires, ainsi qu'\u00e0 la kin\u00e9sith\u00e9rapie et \u00e0 la condition physique.<\/p>\n

Outre le guide de 80 pages destin\u00e9 aux professionnels de la sant\u00e9, GLOBAL a \u00e9galement publi\u00e9 une version beaucoup plus courte destin\u00e9e aux familles, ainsi que des bo\u00eetes \u00e0 outils comprenant des \u00e9valuations faciles \u00e0 suivre pour la maladie c\u0153liaque, le diab\u00e8te, le comportement et les bilans de sant\u00e9 annuels.<\/p>\n

Toutes ces ressources pour adultes sont d\u00e9sormais disponibles gratuitement en espagnol et en japonais sur le site web de la Commission europ\u00e9enne. Site web GLOBAL,<\/a> DS-Connect\u00ae : Le registre du syndrome de Down<\/a>, Site web du CUSD<\/a>et Site web de la JDSA<\/a>. Les traductions ont \u00e9t\u00e9 rendues possibles en partie gr\u00e2ce \u00e0 un don g\u00e9n\u00e9reux de Charlie Monfort, membre du conseil d'administration de GLOBAL et propri\u00e9taire des Colorado Rockies. <\/p>\n

\"GLOBAL est heureux de pouvoir atteindre les locuteurs espagnols et japonais atteints du syndrome de Down et leurs familles aux \u00c9tats-Unis gr\u00e2ce \u00e0 la collaboration des National Institutes of Health\/DS-Connect\u00ae\", d\u00e9clare Michelle Sie Whitten, pr\u00e9sidente-directrice g\u00e9n\u00e9rale de la Global Down Syndrome Foundation. \"Les NIH Eunice Kennedy Shriver<\/em> L'Institut national de la sant\u00e9 infantile et du d\u00e9veloppement humain a apport\u00e9 son soutien d\u00e8s le d\u00e9but. Nous sommes \u00e9galement tr\u00e8s reconnaissants au Dr Macarena Lizama du CUSD, au Dr Hiroshi Tamai, pr\u00e9sident de la JDSA, et au Dr Chisen Takeuchi de la JDSA, qui nous ont aid\u00e9s \u00e0 faire en sorte que ce projet atteigne des centaines de milliers d'hispanophones et de japonophones dans le monde entier\".<\/p>\n

GLOBAL travaille avec le Congr\u00e8s depuis 2006 pour plaider en faveur d'un programme trans-NIH de financement de la recherche sur le syndrome de Down et d'une augmentation des fonds. En d\u00e9cembre 2010, GLOBAL et le NIH ont organis\u00e9 conjointement la premi\u00e8re conf\u00e9rence sur la recherche sur le syndrome de Down, ax\u00e9e sur les registres et les biobanques. L'un des r\u00e9sultats importants de cette conf\u00e9rence a \u00e9t\u00e9 la mise en place d'un groupe de travail sur la recherche sur le syndrome de Down. DS-Connect\u00ae : Le registre du syndrome de Down<\/a>.<\/p>\n

\"Il est tr\u00e8s important pour moi et pour d'autres personnes atteintes du syndrome de Down d'avoir ce document en espagnol\", d\u00e9clare Yadira M. Carrillo, une entrepreneuse de 27 ans qui se d\u00e9fend elle-m\u00eame et qui est atteinte du syndrome de Down. \"J'ai besoin de savoir comment prendre soin de moi en tant qu'adulte !<\/p>\n

\"Le fait de voir les lignes directrices en espagnol donne l'impression que GLOBAL accorde de l'importance aux familles hispanophones comme la mienne\", a d\u00e9clar\u00e9 Yadira Carrillo, m\u00e8re d'une fille de 27 ans atteinte du syndrome de Down. \"La langue est un obstacle auquel certaines familles sont confront\u00e9es pour recevoir des soins m\u00e9dicaux et je sais que cela aidera de nombreuses personnes aux \u00c9tats-Unis et dans le monde.<\/p>\n

Au Chili, GLOBAL a travaill\u00e9 en \u00e9troite collaboration avec le Dr. Lizama sur de nombreux projets, notamment la cr\u00e9ation de la version espagnole de la ligne directrice GLOBAL et de l'outil de gestion de l'information. Ressource COVID-19 et syndrome de Down<\/em><\/a>.<\/p>\n

\"Ce que Michelle, Bryn Gelaro et leur \u00e9quipe ont accompli en mati\u00e8re de recherche et de soins m\u00e9dicaux est tr\u00e8s important\", d\u00e9clare le Dr Macarena Lizama, directrice m\u00e9dicale du El Centro de la Universidad Cat\u00f3lica de S\u00edndrome de Down au Chili. \"Nous sommes honor\u00e9s de collaborer avec GLOBAL sur cette ressource transformatrice et d'am\u00e9liorer l'\u00e9quit\u00e9 m\u00e9dicale, en particulier dans les pays hispanophones o\u00f9 l'acc\u00e8s aux soins m\u00e9dicaux et les ressources de base pour les personnes atteintes du syndrome de Down peuvent \u00eatre tr\u00e8s rares. Je serai tr\u00e8s fi\u00e8re d'utiliser cette ressource dans ma clinique et de la partager avec mes coll\u00e8gues et les familles.<\/p>\n

Le Dr Hiroshi Tamai partage ce sentiment : \"Nous sommes reconnaissants de la collaboration que nous avons eue avec GLOBAL et le fait d'avoir cette ressource importante en japonais est un r\u00eave devenu r\u00e9alit\u00e9. Ma fille et des milliers d'adultes japonais atteints du syndrome de Down en b\u00e9n\u00e9ficieront certainement. Nous nous r\u00e9jouissons de travailler avec GLOBAL et d'ajouter de nouveaux domaines m\u00e9dicaux dans les ann\u00e9es \u00e0 venir\".<\/p>\n

GLOBAL travaille actuellement avec les minist\u00e8res de la sant\u00e9 du Chili et du Japon pour s'assurer que les lignes directrices sont disponibles gratuitement et facilement accessibles sur leurs pages d'accueil consacr\u00e9es au handicap.<\/p>\n

 Pour en savoir plus sur les lignes directrices GLOBAL pour les adultes et t\u00e9l\u00e9charger votre exemplaire d\u00e8s aujourd'hui, rendez-vous sur le site suivant <\/em>www.globaldownsyndrome.org\/medical-care-guidelines-for-adults\/<\/em><\/a> <\/p>\n

Pour en savoir plus sur la Global Down Syndrome Foundation, visitez le site<\/em> www.globaldownsyndrome.org<\/em><\/a> <\/p>\n

# # # <\/p>\n

\u00c0 propos de la Fondation mondiale du syndrome de Down<\/strong> <\/p>\n

La Global Down Syndrome Foundation (GLOBAL) est la plus grande organisation \u00e0 but non lucratif des \u00c9tats-Unis qui s'efforce de sauver des vies et d'am\u00e9liorer consid\u00e9rablement l'\u00e9tat de sant\u00e9 des personnes atteintes du syndrome de Down. GLOBAL a fait don de plus de $32 millions de dollars pour cr\u00e9er le premier institut de recherche sur le syndrome de Down, soutenant plus de 400 scientifiques et plus de 2 200 patients atteints du syndrome de Down, originaires de 33 \u00c9tats et de 10 pays. Travaillant en \u00e9troite collaboration avec le Congr\u00e8s et les National Institutes of Health, GLOBAL est la principale organisation de d\u00e9fense des int\u00e9r\u00eats de la recherche et des soins li\u00e9s au syndrome de Down aux \u00c9tats-Unis. GLOBAL compte plus de 100 organisations de personnes atteintes du syndrome de Down dans le monde entier et fait partie d'un r\u00e9seau d'affili\u00e9s, leInstitut Crnic pour le syndrome de Down<\/a>, leSie Center for Down Syndrome (Centre pour le syndrome de Down)<\/a>et leCentre de la maladie d'Alzheimer et de la cognition de l'Universit\u00e9 du Colorado<\/a>- tous situ\u00e9s sur le campus m\u00e9dical d'Anschutz. <\/p>\n

Les publications m\u00e9dicales de GLOBAL, largement diffus\u00e9es, sont les suivantesLignes directrices mondiales pour les soins m\u00e9dicaux aux adultes atteints du syndrome de Down<\/em><\/a>,Informations sur le syndrome de Down pr\u00e9natal et n\u00e9onatal<\/em><\/a> et le magazine prim\u00e9Le monde du syndrome de DownTM<\/sup><\/em><\/a>. GLOBAL organise \u00e9galement leD\u00e9fil\u00e9 de mode \"Be Beautiful Be Yourself<\/em><\/a>La fondation Globaldownsyndrome est la plus grande collecte de fonds au monde pour le syndrome de Down. Visitez globaldownsyndrome.org et suivez-nous sur les m\u00e9dias sociaux (Facebook et Twitter : @GDSFoundation, Instagram : @globaldownsyndrome). <\/p>\n

AVIS IMPORTANT<\/strong> <\/p>\n

Bien que le contenu de ce communiqu\u00e9 de presse et des lignes directrices de GLOBAL ait \u00e9t\u00e9 \u00e9labor\u00e9 par GLOBAL et les auteurs des lignes directrices de GLOBAL, nous ne pouvons pas et n'avons pas l'intention de fournir des conseils m\u00e9dicaux ou juridiques aux individus. Veuillez contacter votre (vos) fournisseur(s) de soins de sant\u00e9 ou votre (vos) conseiller(s) juridique(s) pour les questions sp\u00e9cifiques \u00e0 vos ant\u00e9c\u00e9dents de sant\u00e9 ou \u00e0 vos soins.  <\/p>\n

Contacts presse<\/strong>            <\/p>\n

Anca Call                                                          
\nacall@globaldownsyndrome.org<\/a>         <\/p>\n

720-320-3832 <\/p>","protected":false},"excerpt":{"rendered":"

Global Down Syndrome Foundation, Centro UC S\u00edndrome de Down and Japan Down Syndrome Association Join Forces to Translate & Provide Online Access to the GLOBAL Adult Guideline Denver \u2013December 29, 2022\u202f\u2013 Today, Global Down Syndrome Foundation (GLOBAL), published a Spanish and Japanese version of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (\u201cGLOBAL 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