{"id":150163,"date":"2022-12-29T10:07:58","date_gmt":"2022-12-29T17:07:58","guid":{"rendered":"https:\/\/www.globaldownsyndrome.org\/?p=150163"},"modified":"2023-01-09T15:04:45","modified_gmt":"2023-01-09T22:04:45","slug":"nuevo-recurso-sobre-el-sindrome-de-down-disponible-en-espanol-y-japones","status":"publish","type":"post","link":"https:\/\/www.globaldownsyndrome.org\/es\/new-down-syndrome-resource-available-in-spanish-and-japanese\/","title":{"rendered":"Nuevo recurso sobre el s\u00edndrome de Down disponible en espa\u00f1ol y japon\u00e9s"},"content":{"rendered":"

Fundaci\u00f3n Global S\u00edndrome de Down, Centro UC S\u00ed<\/em>ndrome de Down y la Asociaci\u00f3n Japonesa del S\u00edndrome de Down unen sus fuerzas para traducir y ofrecer acceso en l\u00ednea a la Gu\u00eda GLOBAL para Adultos<\/em><\/p>\n

Denver <\/strong>-29 de diciembre de 2022<\/strong>- Hoy, Fundaci\u00f3n Global del S\u00edndrome de Down (GLOBAL)<\/a>En colaboraci\u00f3n con el Centro de la Universidad Cat\u00f3lica de S\u00edndrome de Down de Chile (Centro UC S\u00edndrome de Down o CUSD) y la Asociaci\u00f3n Japonesa del S\u00edndrome de Down (JDSA), se ha publicado una versi\u00f3n en espa\u00f1ol y japon\u00e9s de las Directrices GLOBAL de Atenci\u00f3n M\u00e9dica para Adultos con S\u00edndrome de Down (\"Directrices GLOBAL para Adultos\").<\/p>\n

La Gu\u00eda GLOBAL para adultos es la primera gu\u00eda basada en la evidencia para adultos con s\u00edndrome de Down y se public\u00f3 en ingl\u00e9s en JAMA<\/em><\/a>El Revista de la Asociaci\u00f3n M\u00e9dica Americana<\/em>en 2020. El sitio autores de las directrices<\/a> Los nueve temas m\u00e9dicos actuales son: comportamiento, demencia, diabetes, enfermedades cardiovasculares, obesidad, osteoporosis, inestabilidad atlantoaxial, enfermedad tiroidea y enfermedad cel\u00edaca. GLOBAL est\u00e1 trabajando para ampliar los temas e incluir la apnea del sue\u00f1o, los tumores s\u00f3lidos, la leucemia, el cuidado de la vista y la fisioterapia.<\/p>\n

Adem\u00e1s de la gu\u00eda de 80 p\u00e1ginas para profesionales m\u00e9dicos, GLOBAL tambi\u00e9n ha publicado una versi\u00f3n mucho m\u00e1s breve dirigida a las familias, y kits de herramientas que incluyen evaluaciones f\u00e1ciles de seguir para la celiaqu\u00eda, la diabetes, el comportamiento y las revisiones anuales.<\/p>\n

Todos estos recursos para adultos est\u00e1n ahora disponibles en espa\u00f1ol y japon\u00e9s sin coste alguno en el P\u00e1gina web GLOBAL,<\/a> DS-Connect\u00ae: El Registro del S\u00edndrome de Down<\/a>, P\u00e1gina web del CUSD<\/a>y Sitio web de la JDSA<\/a>. Las traducciones fueron posibles en parte gracias a una generosa donaci\u00f3n de Charlie Monfort, miembro de la Junta Directiva de GLOBAL y propietario de los Colorado Rockies. <\/p>\n

\"GLOBAL se complace en poder llegar a los hispanohablantes y japoneses con s\u00edndrome de Down y a sus familias en EE.UU. gracias a la colaboraci\u00f3n de los Institutos Nacionales de la Salud\/DS-Connect\u00ae\", afirma Michelle Sie Whitten, Presidenta y Directora General de la Fundaci\u00f3n Global del S\u00edndrome de Down. \"Los NIH Eunice Kennedy Shriver<\/em> El Instituto Nacional de Salud Infantil y Desarrollo Humano nos ha apoyado desde el principio. Tambi\u00e9n estamos profundamente agradecidos a la Dra. Macarena Lizama del CUSD y al Dr. Hiroshi Tamai, Presidente de la JDSA, y al Dr. Chisen Takeuchi de la JDSA por ayudar a garantizar que esto llegue a cientos de miles de hispanohablantes y japoneses de todo el mundo.\"<\/p>\n

GLOBAL ha trabajado con el Congreso desde 2006 abogando por un programa de financiaci\u00f3n de la investigaci\u00f3n del s\u00edndrome de Down trans-NIH y por el aumento de la financiaci\u00f3n. En diciembre de 2010, GLOBAL y los NIH organizaron conjuntamente la primera conferencia sobre investigaci\u00f3n del s\u00edndrome de Down centrada en registros y biobancos. Un resultado importante fue la creaci\u00f3n de DS-Connect\u00ae: El Registro del S\u00edndrome de Down<\/a>.<\/p>\n

\"Es tan importante para m\u00ed y para otras personas con s\u00edndrome de Down tener esto en espa\u00f1ol\", dice Yadira M. Carrillo, una autogestora y empresaria de 27 a\u00f1os que resulta que tiene s\u00edndrome de Down. \"\u00a1Necesito saber c\u00f3mo cuidarme de adulta!\".<\/p>\n

\"Al ver la gu\u00eda en espa\u00f1ol, siento que GLOBAL valora a las familias hispanohablantes como la m\u00eda\", dijo Yadira Carrillo, madre de una hija de 27 a\u00f1os que tiene s\u00edndrome de Down. \"El idioma es una barrera que algunas familias enfrentan para recibir atenci\u00f3n m\u00e9dica y s\u00e9 que esto ayudar\u00e1 a tantas personas en los EE.UU. e internacionalmente\".<\/p>\n

En Chile, GLOBAL ha colaborado estrechamente con el Dr. Lizama en numerosos proyectos, entre ellos la creaci\u00f3n de la versi\u00f3n espa\u00f1ola de la Gu\u00eda GLOBAL y la Recursos sobre COVID-19 y el s\u00edndrome de Down<\/em><\/a>.<\/p>\n

\"Lo que Michelle, Bryn Gelaro y su equipo han logrado en investigaci\u00f3n y atenci\u00f3n m\u00e9dica es tan importante\", dice la Dra. Macarena Lizama, Directora M\u00e9dica de El Centro de la Universidad Cat\u00f3lica de S\u00edndrome de Down en Chile. \"Es un honor para nosotros colaborar con GLOBAL en este recurso transformador y mejorar la equidad m\u00e9dica, especialmente para los pa\u00edses de habla hispana donde el acceso a la atenci\u00f3n m\u00e9dica y los recursos b\u00e1sicos para las personas con s\u00edndrome de Down pueden ser muy escasos. Estar\u00e9 muy orgulloso de utilizar este recurso en mi cl\u00ednica y compartirlo con mis colegas y familias.\"<\/p>\n

El Dr. Hiroshi Tamai se hace eco de este sentimiento: \"Estamos agradecidos por la colaboraci\u00f3n que hemos tenido con GLOBAL y disponer de este importante recurso en japon\u00e9s es un sue\u00f1o hecho realidad. Mi hija y miles de adultos japoneses con s\u00edndrome de Down seguramente se beneficiar\u00e1n. Estamos deseando trabajar con GLOBAL y a\u00f1adir nuevas \u00e1reas m\u00e9dicas en los pr\u00f3ximos a\u00f1os.\"<\/p>\n

GLOBAL est\u00e1 trabajando actualmente con los Ministerios de Sanidad de Chile y Jap\u00f3n para garantizar que las directrices est\u00e9n disponibles de forma gratuita y se puedan encontrar f\u00e1cilmente en sus p\u00e1ginas de inicio sobre discapacidad.<\/p>\n

 Para obtener m\u00e1s informaci\u00f3n sobre la Gu\u00eda Mundial del Adulto y descargar su ejemplar hoy mismo, visite <\/em>www.globaldownsyndrome.org\/medical-care-guidelines-for-adults\/<\/em><\/a> <\/p>\n

Para m\u00e1s informaci\u00f3n sobre la Fundaci\u00f3n Global S\u00edndrome de Down, visite<\/em> www.globaldownsyndrome.org<\/em><\/a> <\/p>\n

# # # <\/p>\n

Acerca de la Fundaci\u00f3n Global S\u00edndrome de Down<\/strong> <\/p>\n

La Global Down Syndrome Foundation (GLOBAL) es la mayor organizaci\u00f3n sin \u00e1nimo de lucro de Estados Unidos que trabaja para salvar vidas y mejorar dr\u00e1sticamente los resultados sanitarios de las personas con s\u00edndrome de Down. GLOBAL ha donado m\u00e1s de $32 millones para crear el primer instituto de investigaci\u00f3n del s\u00edndrome de Down, que presta apoyo a m\u00e1s de 400 cient\u00edficos y a m\u00e1s de 2.200 pacientes con s\u00edndrome de Down de 33 estados y 10 pa\u00edses. En estrecha colaboraci\u00f3n con el Congreso y los Institutos Nacionales de Salud, GLOBAL es la principal organizaci\u00f3n de defensa de la investigaci\u00f3n y la atenci\u00f3n del s\u00edndrome de Down en Estados Unidos. GLOBAL cuenta con m\u00e1s de 100 organizaciones de s\u00edndrome de Down en todo el mundo, y forma parte de una red de afiliados - laInstituto Crnic para el S\u00edndrome de Down<\/a>ElCentro Sie para el s\u00edndrome de Down<\/a>y elCentro de Alzheimer y Cognici\u00f3n de la Universidad de Colorado<\/a>- todo ello en el Anschutz Medical Campus. <\/p>\n

Entre las publicaciones m\u00e9dicas de GLOBAL de mayor difusi\u00f3n figuranGu\u00eda global de cuidados m\u00e9dicos para adultos con s\u00edndrome de Down<\/em><\/a>,Informaci\u00f3n prenatal y neonatal sobre el s\u00edndrome de Down<\/em><\/a> y la galardonada revistaEl mundo del s\u00edndrome de DownTM<\/sup><\/em><\/a>. GLOBAL tambi\u00e9n organiza elDesfile de moda Be Beautiful Be Yourself<\/em><\/a>la mayor recaudaci\u00f3n de fondos para el s\u00edndrome de Down del mundo. Visita globaldownsyndrome.org y s\u00edguenos en las redes sociales (Facebook y Twitter: @GDSFoundation, Instagram: @globaldownsyndrome). <\/p>\n

AVISO IMPORTANTE<\/strong> <\/p>\n

Aunque el contenido de este comunicado de prensa y de las Directrices GLOBAL ha sido desarrollado por GLOBAL y los autores de las Directrices GLOBAL, no podemos ni pretendemos ofrecer asesoramiento m\u00e9dico o jur\u00eddico a las personas. Por favor, p\u00f3ngase en contacto con su(s) m\u00e9dico(s) o asesor(es) legal(es) para preguntas espec\u00edficas sobre su historial m\u00e9dico o cuidados individuales.  <\/p>\n

Contactos de prensa<\/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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