{"id":14782,"date":"2023-06-26T18:38:06","date_gmt":"2023-06-26T16:38:06","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=14782"},"modified":"2023-06-26T18:38:06","modified_gmt":"2023-06-26T16:38:06","slug":"el-viaje-del-paciente-cutis-laxa","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/es\/el-viaje-del-paciente-cutis-laxa\/","title":{"rendered":"El  \u00abViaje del Paciente\u00bb Cutis Laxa"},"content":{"rendered":"<p style=\"text-align: center;\"><em>El\u00a0 \u00abViaje del Paciente\u00bb busca identificar<\/em><\/p>\n<p style=\"text-align: center;\"><em>las necesidades que son espec\u00edficas<\/em><\/p>\n<p style=\"text-align: center;\"><em>para un s\u00edndrome en particular.<\/em><\/p>\n<p style=\"text-align: center;\"><em>Para lograrlo, los representantes de los pacientes<\/em><\/p>\n<p style=\"text-align: center;\"><em>han completado un \u00abmapa\u00bb de las necesidades<\/em><\/p>\n<p style=\"text-align: center;\"><em>de cada uno de los s\u00edndromes gen\u00e9ticos raros que representan,<\/em><\/p>\n<p style=\"text-align: center;\"><em>a trav\u00e9s de las diferentes etapas del Recorrido del Paciente.<\/em><\/p>\n<p>&nbsp;<\/p>\n<p>Esta es la definici\u00f3n del Viaje del Paciente, como se menciona en este <a href=\"https:\/\/www.cutislaxa.org\/fr\/2020_patient-journeys_ejhg-1-2\/\">art\u00edculo<\/a> (en ingl\u00e9s) publicado en 2019.<\/p>\n<p>Es un trabajo muy importante y hemos establecido el \u00abViaje del Paciente\u00bb Cutis Laxa.<\/p>\n<p>Dado que Cutis Laxa es una enfermedad tan compleja, con varios subtipos y varios s\u00edntomas asociados, no pod\u00edamos hacer solo \u00abViaje del Paciente\u00bb para la Cutis Laxa. Agrupamos los s\u00edntomas asociados de los diferentes subtipos y finalmente pudimos establecer dos grupos de subtipos.<\/p>\n<p>Estos son los resultados de los dos \u00abViajes del Paciente\u00bb para los enfermos con Cutis Laxa:<\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/esern-skin_patient-journey_cl-arteries-lungs_illustration-2\/\">Cutis Laxa con s\u00edntomas arteriales y pulmonares<\/a><\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/www.cutislaxa.org\/fr\/esern-skin_patient-journey_cl-neuro-squelette_illustration-2\/\">Cutis Laxa con s\u00edntomas neurol\u00f3gicos y esquel\u00e9ticos<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El\u00a0 \u00abViaje del Paciente\u00bb busca identificar las necesidades que son espec\u00edficas para un s\u00edndrome en particular. Para lograrlo, los representantes de los pacientes han completado un \u00abmapa\u00bb de las necesidades de cada uno de los s\u00edndromes gen\u00e9ticos raros que representan, a trav\u00e9s de las diferentes etapas del Recorrido del Paciente. &nbsp; Esta es la definici\u00f3n [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":7215,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[74,79,73,76],"tags":[],"class_list":["post-14782","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-investigacion","category-investigacion-medicina-genetica","category-number-mutations-es","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>El &quot;Viaje del Paciente&quot; Cutis Laxa - CUTIS LAXA INTERNATIONALE<\/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:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"El &quot;Viaje del Paciente&quot; Cutis Laxa - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"El\u00a0 \u00abViaje del Paciente\u00bb busca identificar las necesidades que son espec\u00edficas para un s\u00edndrome en particular. Para lograrlo, los representantes de los pacientes han completado un \u00abmapa\u00bb de las necesidades de cada uno de los s\u00edndromes gen\u00e9ticos raros que representan, a trav\u00e9s de las diferentes etapas del Recorrido del Paciente. &nbsp; Esta es la definici\u00f3n [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/\" \/>\n<meta property=\"og:site_name\" content=\"CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\" \/>\n<meta property=\"article:published_time\" content=\"2023-06-26T16:38:06+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2018\/03\/CL-Headerimage-light-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1600\" \/>\n\t<meta property=\"og:image:height\" content=\"680\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Marie-Claude\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Marie-Claude\" \/>\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:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"El \u00abViaje del Paciente\u00bb Cutis Laxa\",\"datePublished\":\"2023-06-26T16:38:06+00:00\",\"dateModified\":\"2023-06-26T16:38:06+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/\"},\"wordCount\":177,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"Investigaci\u00f3n\",\"Investigaci\u00f3n- Medicina - Gen\u00e9tica\",\"Mutations\",\"Noticias\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/\",\"url\":\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/\",\"name\":\"El \\\"Viaje del Paciente\\\" Cutis Laxa - CUTIS LAXA INTERNATIONALE\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#website\"},\"datePublished\":\"2023-06-26T16:38:06+00:00\",\"dateModified\":\"2023-06-26T16:38:06+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.cutislaxa.org\/the-cutis-laxa-patient-journey\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.cutislaxa.org\/es\/bienvenida\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"El &#8220;Viaje del Paciente&#8221; 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