{"id":5018,"date":"2019-12-20T06:23:06","date_gmt":"2019-12-20T06:23:06","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/12\/20\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\/"},"modified":"2019-12-20T06:23:06","modified_gmt":"2019-12-20T06:23:06","slug":"la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/12\/20\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\/","title":{"rendered":"La exposici\u00f3n \u2018Expression of Hope\u2019 llega a Madrid para concienciar sobre las ER"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El 20 de diciembre se inaugura en la Nave de los Motores del Metro de Madrid, la exposici\u00f3n, creada por Sanofi Genzyme, Expression Of Hope. Es esta ocasi\u00f3n, tambi\u00e9n vendr\u00e1 de la mano del Metro de Madrid, de la Asociaci\u00f3n Espa\u00f1ola de Enfermos Pompe, la Asociaci\u00f3n Espa\u00f1ola de Enfermos de Glucogenosis, Comunidad de Madrid y FEDER.<\/p>\n<p>En la inauguraci\u00f3n participar\u00e1n Francisco Vivar, Director General de Sanofi Genzyme, David Javierre, Public Affairs &amp; Advocacy Rare Diseases de Sanofi Genzyme, Silvia Rold\u00e1n, Consejera Delegada del Metro de Madrid, Juan del Rubio, Diputado de la Comisi\u00f3n de Transportes, Tom\u00e1s Marcos, Senador y Diputado Portavoz de Pol\u00edticas Integrales y Discapacidad, Jose Mar\u00eda Ant\u00f3n, Viceconsejero de Sanidad, Alberto Reyero, Consejero de Pol\u00edticas Sociales, Familia, Igualdad y Natalidad. Adem\u00e1s FEDER estar\u00e1 presente en esta muestra que ser\u00e1 guiada por David Javierre.<\/p>\n<p>En 2006 Genzyme cre\u00f3 el programa Expression of Hope para que Ias personas afectadas por Enfermedades de Dep\u00f3sito Lisosomal (EDL) tuvieran Ia oportunidad de concienciar a otras personas sobre estas enfermedades gen\u00e9ticas raras.<\/p>\n<p>En colaboraci\u00f3n con organizaciones de apoyo a pacientes de todo el mundo, se anima a Ias personas afectadas por una EDL a que creen una obra de arte original para compartir sus sentimientos de esperanza y adentrarse en Ia realidad, Ias sensaciones y Ias experiencias de vivir con un trastorno de este tipo.<\/p>\n<p>En 2009 se present\u00f3 el Expression of Hope II y esta tercera edici\u00f3n, Expression of Hope III demuestra el compromiso de Ia comunidad internacional de personas afectadas por EDL para fomentar Ia concienciaci\u00f3n y comprensi\u00f3n de estas enfermedades<\/p>\n<p>\u00daltima actualizaci\u00f3n 20\/12\/2019<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13417-la-exposici%C3%B3n-%E2%80%98expression-of-hope%E2%80%99-llega-a-madrid-para-concienciar-sobre-las-er\" target=\"_blank\" rel=\"noopener noreferrer\">La exposici\u00f3n \u2018Expression of Hope\u2019 llega a Madrid para concienciar sobre las ER<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El 20 de diciembre se inaugura en la Nave de los Motores del Metro de Madrid, la exposici\u00f3n, creada por Sanofi Genzyme, Expression Of Hope. Es esta ocasi\u00f3n, tambi\u00e9n vendr\u00e1 de la mano del Metro de Madrid, de la Asociaci\u00f3n Espa\u00f1ola de [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-5018","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La exposici\u00f3n \u2018Expression of Hope\u2019 llega a Madrid para concienciar sobre las ER - 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\/2019\/12\/20\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La exposici\u00f3n \u2018Expression of Hope\u2019 llega a Madrid para concienciar sobre las ER - 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; El 20 de diciembre se inaugura en la Nave de los Motores del Metro de Madrid, la exposici\u00f3n, creada por Sanofi Genzyme, Expression Of Hope. Es esta ocasi\u00f3n, tambi\u00e9n vendr\u00e1 de la mano del Metro de Madrid, de la Asociaci\u00f3n Espa\u00f1ola de [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2019\/12\/20\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\/\" \/>\n<meta property=\"og:site_name\" content=\"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/asociacionsindromecharge\" \/>\n<meta property=\"article:published_time\" content=\"2019-12-20T06:23:06+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2013\/09\/logodecharge300x98.png\" \/>\n\t<meta property=\"og:image:width\" content=\"300\" \/>\n\t<meta property=\"og:image:height\" content=\"98\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Charge\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:site\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Charge\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/12\\\/20\\\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/12\\\/20\\\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"La exposici\u00f3n \u2018Expression of Hope\u2019 llega a Madrid para concienciar sobre las ER\",\"datePublished\":\"2019-12-20T06:23:06+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/12\\\/20\\\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\\\/\"},\"wordCount\":326,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/12\\\/20\\\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/12\\\/20\\\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/12\\\/20\\\/la-exposicion-expression-of-hope-llega-a-madrid-para-concienciar-sobre-las-er\\\/\",\"name\":\"La exposici\u00f3n \u2018Expression of Hope\u2019 llega a Madrid para concienciar sobre las ER - 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