{"id":7380,"date":"2021-07-06T07:33:31","date_gmt":"2021-07-06T07:33:31","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/07\/06\/el-hospital-sant-joan-de-deu-organiza-una-jornada-sobre-el-sindrome-de-rett\/"},"modified":"2021-07-06T07:33:31","modified_gmt":"2021-07-06T07:33:31","slug":"el-hospital-sant-joan-de-deu-organiza-una-jornada-sobre-el-sindrome-de-rett","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/07\/06\/el-hospital-sant-joan-de-deu-organiza-una-jornada-sobre-el-sindrome-de-rett\/","title":{"rendered":"El Hospital Sant Joan de Deu organiza una jornada sobre el S\u00edndrome de Rett"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Un a\u00f1o m\u00e1s, en el HSJD hemos organizado la \u00abJornada de actualizaci\u00f3n en s\u00edndrome de Rett: del paciente al laboratorio, un camino de ida y vuelta\u00bb. Como otros a\u00f1os, cubriremos las novedades en aspectos cl\u00ednicos y de investigaci\u00f3n en s\u00edndrome de Rett. La jornada se plantea como un espacio de encuentro entre profesionales y familias, en el que actualizar en nuestro trabajo y compartir metas. Ha sido siempre muy bien recibida, con en torno a 100 asistentes en las \u00faltimas ediciones.<\/p>\n<p>Creemos que puede ser de inter\u00e9s para socios FEDER, con lo que quer\u00edamos informaros de esta jornada, y preguntaros si podr\u00edais hacer difusi\u00f3n por las v\u00edas que consider\u00e9is entre quien pudiera estar interesado.<\/p>\n<p>La jornada ser\u00e1 en esta ocasi\u00f3n en formato webinar, el s\u00e1bado 10 de 16 a 19h (hora peninsular). Para inscribirse \u00fanicamente hay que enviar un mail a la direcci\u00f3n: alfonsoluis.oyarzabal@sjd.es<\/p>\n<p>Un a\u00f1o m\u00e1s, el Hospital Sant Joan de Deu de Barcelona organiza la Jornada de Actualizaci\u00f3n en S\u00edndrome de Rett: Del paciente al laboratorio, un camino de ida y vuelta. Tendr\u00e1 lugar de manera online el pr\u00f3ximo 10 de julio de 16:00 a 19:00<\/p>\n<p>La jornada se plantea como un espacio de encuentro entre profesionales y familias, para actualizar su trabajo y compartir metas. Ha sido siempre muy bien recibida, con en torno a 100 asistentes en las \u00faltimas ediciones.<\/p>\n<p>En esta ocasi\u00f3n hablar\u00e1 en un primer bloque sobre los aspectos cl\u00ednicos del S\u00edndrome de Rett:<\/p>\n<ul>\n<li>Avances en el manejo cl\u00ednico del S\u00edndrome de Rett<\/li>\n<li>Adaptaci\u00f3n de las escalas motoras en S\u00edndrome de Rett: La implicaci\u00f3n de las familias.<\/li>\n<li>La importancia de un registro unificado de pacientes con S\u00edndrome de Rett<\/li>\n<\/ul>\n<p>A continuaci\u00f3n en el segundo bloque se abordar\u00e1 los avances y proyectos de investigaci\u00f3n:<\/p>\n<ul>\n<li>Investigaci\u00f3n en la base molecular de las v\u00edas funcionales del S\u00edndrome de Rett<\/li>\n<li>La funci\u00f3n mitocondrial como diana terap\u00e9utica: resumen de resultados<\/li>\n<\/ul>\n<p>Y por \u00faltimo se hablar\u00e1 sobre nuevos tratamientos y ensayos cl\u00ednicos<\/p>\n<ul>\n<li>Estado actual de ensayos cl\u00ednicos internacionales<\/li>\n<li>Tratamiento neuroprotector: Comienzo de ensayo cl\u00ednico<\/li>\n<li>Neuroestimulaci\u00f3n para el tratamiento de S\u00edndrome de Rett<\/li>\n<\/ul>\n<p>Para poder acudir solo tendr\u00e1s que inscribirte a trav\u00e9s de un correo, envi\u00e1ndolo a alfonsoluis.oyarzabal@sjd.es<\/p>\n<p>\u00daltima actualizaci\u00f3n 06\/07\/2021<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15599-el-hospital-sant-joan-de-deu-organiza-una-jornada-sobre-el-s%C3%ADndrome-de-rett\" target=\"_blank\" rel=\"noopener\">El Hospital Sant Joan de Deu organiza una jornada sobre el S\u00edndrome de Rett<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Un a\u00f1o m\u00e1s, en el HSJD hemos organizado la \u00abJornada de actualizaci\u00f3n en s\u00edndrome de Rett: del paciente al laboratorio, un camino de ida y vuelta\u00bb. Como otros a\u00f1os, cubriremos las novedades en aspectos cl\u00ednicos y de investigaci\u00f3n en s\u00edndrome de Rett. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-7380","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>El Hospital Sant Joan de Deu organiza una jornada sobre el S\u00edndrome de Rett - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2021\/07\/06\/el-hospital-sant-joan-de-deu-organiza-una-jornada-sobre-el-sindrome-de-rett\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"El Hospital Sant Joan de Deu organiza una jornada sobre el S\u00edndrome de Rett - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Un a\u00f1o m\u00e1s, en el HSJD hemos organizado la \u00abJornada de actualizaci\u00f3n en s\u00edndrome de Rett: del paciente al laboratorio, un camino de ida y vuelta\u00bb. Como otros a\u00f1os, cubriremos las novedades en aspectos cl\u00ednicos y de investigaci\u00f3n en s\u00edndrome de Rett. 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