{"id":10166,"date":"2024-07-10T05:31:40","date_gmt":"2024-07-10T05:31:40","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/"},"modified":"2024-07-10T05:31:40","modified_gmt":"2024-07-10T05:31:40","slug":"juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/","title":{"rendered":"Juan Vila, de Recordati Rare Diseases: \u00abEn la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro\u00bb"},"content":{"rendered":"

Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

\n

Se calcula que existen alrededor de 7.000 enfermedades de las denominadas raras o poco frecuentes<\/b>. De ellas, apenas un 1% disponen de un tratamiento eficaz. La falta de conocimiento e investigaci\u00f3n provoca que millones de personas con este tipo de enfermedades no tengan una opci\u00f3n terap\u00e9utica espec\u00edfica que mejore su calidad de vida. Para cambiar esta realidad, es necesaria la colaboraci\u00f3n de estados, pacientes y laboratorios como Recordati Rare Diseases<\/b>, que apuestan por investigar y desarrollar medicamentos para un grupo determinados de enfermedades minoritarias<\/a>, como explica su director general, Juan Vila.<\/p>\n

Cubrimos y tratamos 27 enfermedades poco frecuentes a trav\u00e9s de 15 medicamentos espec\u00edficos<\/h1>\n

El c\u00edrculo vicioso de la investigaci\u00f3n es maravilloso, porque de esa investigaci\u00f3n los que se van a beneficiar m\u00e1s son los pacientes<\/h1>\n<\/div>\n

Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5523488\/0\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/<\/p>\n","protected":false},"excerpt":{"rendered":"

Se calcula que existen alrededor de 7.000 enfermedades de las denominadas raras o poco frecuentes. De ellas, apenas un 1% disponen de un tratamiento eficaz….<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[],"class_list":["post-10166","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"\nJuan Vila, de Recordati Rare Diseases: "En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro" - 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\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Juan Vila, de Recordati Rare Diseases: "En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Se calcula que existen alrededor de 7.000 enfermedades de las denominadas raras o poco frecuentes. De ellas, apenas un 1% disponen de un tratamiento eficaz….\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/\" \/>\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=\"2024-07-10T05:31:40+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=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Juan Vila, de Recordati Rare Diseases: \u00abEn la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro\u00bb\",\"datePublished\":\"2024-07-10T05:31:40+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/\"},\"wordCount\":172,\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/\",\"name\":\"Juan Vila, de Recordati Rare Diseases: \\\"En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro\\\" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2024-07-10T05:31:40+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2024\\\/07\\\/10\\\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Juan Vila, de Recordati Rare Diseases: “En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro”\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/\",\"name\":\"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/sindromecharge.es\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"es\"},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\",\"name\":\"Charge\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x\",\"url\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x\",\"contentUrl\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x\",\"caption\":\"Charge\"},\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/author\\\/admin\\\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Juan Vila, de Recordati Rare Diseases: \"En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro\" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/","og_locale":"es_ES","og_type":"article","og_title":"Juan Vila, de Recordati Rare Diseases: \"En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro\" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Se calcula que existen alrededor de 7.000 enfermedades de las denominadas raras o poco frecuentes. De ellas, apenas un 1% disponen de un tratamiento eficaz….","og_url":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2024-07-10T05:31:40+00:00","og_image":[{"width":300,"height":98,"url":"https:\/\/sindromecharge.es\/wp-content\/uploads\/2013\/09\/logodecharge300x98.png","type":"image\/png"}],"author":"Charge","twitter_card":"summary_large_image","twitter_creator":"@sindromecharge","twitter_site":"@sindromecharge","twitter_misc":{"Escrito por":"Charge","Tiempo de lectura":"1 minuto"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Juan Vila, de Recordati Rare Diseases: \u00abEn la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro\u00bb","datePublished":"2024-07-10T05:31:40+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/"},"wordCount":172,"articleSection":["noticias"],"inLanguage":"es"},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/","url":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/","name":"Juan Vila, de Recordati Rare Diseases: \"En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro\" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2024-07-10T05:31:40+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2024\/07\/10\/juan-vila-recordati-rare-diseases-investigacion-enfermedades-raras-todos-tenemos-que-arrimar-hombro\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Juan Vila, de Recordati Rare Diseases: “En la investigaci\u00f3n en enfermedades raras todos tenemos que arrimar el hombro”"}]},{"@type":"WebSite","@id":"https:\/\/sindromecharge.es\/#website","url":"https:\/\/sindromecharge.es\/","name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/sindromecharge.es\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"es"},{"@type":"Person","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039","name":"Charge","image":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/secure.gravatar.com\/avatar\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x","url":"https:\/\/secure.gravatar.com\/avatar\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/c3b46e32a0fc3b093a0873fb767bf3293de856293065e84ef06b7ec7a8acfb98?s=96&d=identicon&r=x","caption":"Charge"},"url":"https:\/\/sindromecharge.es\/index.php\/author\/admin\/"}]}},"_links":{"self":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/10166","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/comments?post=10166"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/10166\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=10166"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=10166"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=10166"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}