Noticias de Navarra<\/a><\/span> | Una representaci\u00f3n de la asociaci\u00f3n Gerna (Grupo de Enfermedades Raras de Navarra) ha pedido ante la comisi\u00f3n de Salud que se potencie la capacidad del Registro de Enfermedades Raras de Navarra, proporcionando m\u00e1s medios t\u00e9cnicos y personales y previendo partidas presupuestarias \u201cespec\u00edficas\u201d.<\/p>\n\u201cAl ritmo que vamos, con las pocas personas que hay trabajando y los pocos medios, si no se potencia este Registro de Enfermedades Raras de Navarra vamos a tardar 80 a\u00f1os en revisar todos los casos\u201d, ha advertido el secretario de Gerna, Jos\u00e9 Mar\u00eda Casado.<\/p>\n
Seg\u00fan ha explicado, entre el 6% y 8% de la poblaci\u00f3n que vive en zonas desarrolladas del mundo sufre una afectaci\u00f3n de este tipo.<\/p>\n
Seg\u00fan ese porcentaje, en Espa\u00f1a habr\u00eda alrededor de 3 millones de personas afectadas por alguna de las 7.000 u 8.000 enfermedades raras identificadas por la OMS, cifra que en Navarra rondar\u00eda las 38.000 personas. Sin embargo, en la Comunidad Foral solo se han validado 983 casos en relaci\u00f3n a todos los estudiados, lo que supone el 36% del total.<\/p>\n
\u201cSi consideramos que en Navarra, por estimaciones, hay 38.000 personas con Enfermedades Raras, que en estos cinco a\u00f1os hemos logrado analizar a 2.751 familias, y que de estos datos hemos conseguido el 36% de validaci\u00f3n, imag\u00ednense cu\u00e1ntos a\u00f1os hacen falta para que las 38.000 personas lleguemos a identificarlas\u201d, ha lamentado. Por ello, han propuesto potenciar la capacidad del registro de Enfermedades Raras, proporcionando m\u00e1s medios t\u00e9cnicos y m\u00e1s recursos personales, adem\u00e1s de prever partidas presupuestarias espec\u00edficas.<\/p>\n
Seg\u00fan han argumentado, no es posible planificar \u201cuna buena atenci\u00f3n\u201d si no se conoce cu\u00e1ntas personas est\u00e1n afectadas, cu\u00e1les son sus patolog\u00edas, el nivel de las mismas, su distribuci\u00f3n territorial o sus condiciones.<\/p>\n
\u00daltima actualizaci\u00f3n: 04\/12\/2018.<\/p>\n<\/p>\n
Fuente: FEDER Gerna pide mejorar el registro de enfermedades raras<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: Noticias de Navarra | Una representaci\u00f3n de la asociaci\u00f3n Gerna (Grupo de Enfermedades Raras de Navarra) ha pedido ante la comisi\u00f3n de Salud que se potencie la capacidad del Registro de Enfermedades Raras de Navarra, proporcionando m\u00e1s medios t\u00e9cnicos y personales y […]<\/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-4133","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\n
Gerna pide mejorar el registro de enfermedades raras - 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\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Gerna pide mejorar el registro de enfermedades raras - 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: Fuente: Noticias de Navarra | Una representaci\u00f3n de la asociaci\u00f3n Gerna (Grupo de Enfermedades Raras de Navarra) ha pedido ante la comisi\u00f3n de Salud que se potencie la capacidad del Registro de Enfermedades Raras de Navarra, proporcionando m\u00e1s medios t\u00e9cnicos y personales y […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/\" \/>\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=\"2018-12-04T06:26:45+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\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Gerna pide mejorar el registro de enfermedades raras\",\"datePublished\":\"2018-12-04T06:26:45+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/\"},\"wordCount\":336,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/\",\"name\":\"Gerna pide mejorar el registro de enfermedades raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2018-12-04T06:26:45+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2018\\\/12\\\/04\\\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Gerna pide mejorar el registro de enfermedades raras\"}]},{\"@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":"Gerna pide mejorar el registro de enfermedades raras - 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\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/","og_locale":"es_ES","og_type":"article","og_title":"Gerna pide mejorar el registro de enfermedades raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: Noticias de Navarra | Una representaci\u00f3n de la asociaci\u00f3n Gerna (Grupo de Enfermedades Raras de Navarra) ha pedido ante la comisi\u00f3n de Salud que se potencie la capacidad del Registro de Enfermedades Raras de Navarra, proporcionando m\u00e1s medios t\u00e9cnicos y personales y […]","og_url":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2018-12-04T06:26:45+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":"2 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Gerna pide mejorar el registro de enfermedades raras","datePublished":"2018-12-04T06:26:45+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/"},"wordCount":336,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/","url":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/","name":"Gerna pide mejorar el registro de enfermedades raras - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2018-12-04T06:26:45+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2018\/12\/04\/gerna-pide-mejorar-el-registro-de-enfermedades-raras\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Gerna pide mejorar el registro de enfermedades raras"}]},{"@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\/4133","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=4133"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/4133\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=4133"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=4133"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=4133"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}