{"id":30509,"date":"2024-05-06T15:22:59","date_gmt":"2024-05-06T19:22:59","guid":{"rendered":"https:\/\/nephcure.org\/?p=30509"},"modified":"2024-10-01T12:35:12","modified_gmt":"2024-10-01T16:35:12","slug":"nephcures-esfuerzos-continuos-para-educar-y-empoderar-a-las-comunidades-en-la-lucha-contra-la-enfermedad-renal-apol1-2","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/","title":{"rendered":"Presentamos un nuevo destino para la comunidad de enfermedades renales raras"},"content":{"rendered":"<p><strong><span class=\"legendSpanClass\"><span class=\"xn-location\">FILADELFIA<\/span><\/span>, <span class=\"legendSpanClass\"><span class=\"xn-chron\">6 de mayo de 2024<\/span><\/span><\/strong>\u00a0\u2014 NephCure, una organizaci\u00f3n l\u00edder sin fines de lucro dedicada a encontrar mejores opciones de tratamiento y una cura para enfermedades renales raras, anuncia con orgullo el lanzamiento de su nuevo sitio web. <a href=\"http:\/\/nephcure.org\/es\/\" target=\"_blank\" rel=\"nofollow noopener\">NephCure.org<\/a>. La plataforma en l\u00ednea renovada sirve como un centro fundamental de informaci\u00f3n y un hogar para todas las personas y familias afectadas por enfermedades renales raras que derraman prote\u00ednas.<\/p>\n<p>Con m\u00e1s de 20 a\u00f1os de dedicaci\u00f3n a toda la comunidad de enfermedades renales raras (ERR), NephCure ha elaborado meticulosamente el nuevo <a href=\"http:\/\/nephcure.org\/es\/\" target=\"_blank\" rel=\"nofollow noopener\">NephCure.org<\/a> para servir como un destino integral y f\u00e1cil de usar. Este sitio web actualizado acerca a la organizaci\u00f3n un paso m\u00e1s hacia el logro de su visi\u00f3n: construir un mundo donde todas las personas con enfermedades renales raras tengan acceso a nuevos y mejores tratamientos, y alg\u00fan d\u00eda a una cura.<\/p>\n<p>\u201cEste sitio web representa un importante paso adelante en nuestros esfuerzos continuos para empoderar y apoyar a las personas y familias afectadas por RKD. Creemos que al proporcionar una plataforma centralizada para informaci\u00f3n y recursos vitales actuales, incluidas nuestras herramientas de combinaci\u00f3n \u00fanicas para conectar con m\u00e9dicos expertos y ensayos cl\u00ednicos, as\u00ed como la participaci\u00f3n de la comunidad, podemos impulsar el impacto y los desarrollos continuos dentro del espacio RKD\u201d, dijo el CEO de NephCure. <span class=\"xn-person\">Josh Tarnoff<\/span> dicho.<\/p>\n<p>El nuevo <a href=\"http:\/\/nephcure.org\/es\/\" target=\"_blank\" rel=\"nofollow noopener\">NephCure.org<\/a> ofrece una variedad de caracter\u00edsticas y funcionalidades \u00fatiles dise\u00f1adas para satisfacer las diversas necesidades de toda la comunidad RKD:<\/p>\n<ul type=\"disc\">\n<li><a href=\"https:\/\/nephcure.org\/es\/gestionando-rkd\/encontrar-un-especialista\/\"><b>Busque y con\u00e9ctese con especialistas locales de NephCure: <\/b><\/a>Las personas pueden buscar f\u00e1cilmente por c\u00f3digo postal y conectarse directamente con los especialistas locales de NephCure que se especializan en enfermedades renales raras, lo que garantiza el acceso a atenci\u00f3n especializada.<\/li>\n<li><a href=\"https:\/\/nephcure.org\/es\/gestionando-rkd\/ensayos-clinicos\/\"><b>Encuentre e inscr\u00edbase f\u00e1cilmente en ensayos cl\u00ednicos activos: <\/b><\/a>Los pacientes y cuidadores pueden encontrar e inscribirse c\u00f3modamente en ensayos cl\u00ednicos en curso, lo que contribuye al avance de la investigaci\u00f3n y al desarrollo de nuevas opciones de tratamiento y, al mismo tiempo, reciben la mejor atenci\u00f3n posible.<\/li>\n<li><a href=\"https:\/\/nephcure.org\/es\/apoyo\/recursos\/\"><b>Busque y filtre los \u00faltimos recursos de RKD: <\/b><\/a>Los usuarios pueden acceder a la colecci\u00f3n de recursos, materiales educativos, videos y otra informaci\u00f3n de apoyo de NephCure relacionada con enfermedades renales raras.<\/li>\n<li><a href=\"https:\/\/nephcure.org\/es\/apoyo\/historias-de-pacientes\/\"><b>Explore las historias de pacientes de RKD: <\/b><\/a>El sitio web presenta una colecci\u00f3n vibrante de historias de pacientes que brindan inspiraci\u00f3n dentro de la comunidad RKD.<\/li>\n<li><a href=\"https:\/\/nephcure.org\/es\/involucrarse\/eventos\/\"><b>Interact\u00fae con la comunidad RKD a trav\u00e9s de eventos: <\/b><\/a>Las personas pueden participar en eventos comunitarios, grupos de apoyo, eventos para recaudar fondos y otras iniciativas destinadas a fomentar conexiones y brindar apoyo adicional.<\/li>\n<\/ul>\n<p>El lanzamiento de la actualizaci\u00f3n.\u00a0<a href=\"http:\/\/nephcure.org\/es\/\" target=\"_blank\" rel=\"nofollow noopener\">NephCure.org<\/a> llega en un momento crucial en el que los avances en la investigaci\u00f3n y las opciones de tratamiento para la enfermedad renal rara que derrama prote\u00ednas est\u00e1n evolucionando r\u00e1pidamente. Al proporcionar este recurso integral en l\u00ednea, NephCure tiene como objetivo promover la investigaci\u00f3n continua, la accesibilidad al apoyo y la informaci\u00f3n y, en \u00faltima instancia, ayudar a encontrar mejores tratamientos y una cura para todas las personas afectadas por RKD.<\/p>\n<p class=\"prnml40\">Para obtener m\u00e1s informaci\u00f3n sobre NephCure y explorar el nuevo sitio web usted mismo, visite <a href=\"http:\/\/nephcure.org\/es\/\" target=\"_blank\" rel=\"nofollow noopener\">NephCure.org<\/a>.<\/p>\n<p><strong>Acerca de NephCure:<\/strong><\/p>\n<p>La misi\u00f3n de NephCure es capacitar a las personas con una enfermedad renal rara que derrama prote\u00ednas para que se hagan cargo de su salud y, al mismo tiempo, lideran la revoluci\u00f3n en investigaci\u00f3n, nuevos tratamientos y atenci\u00f3n. Fundada en 2000 por un grupo de padres pacientes comprometidos, NephCure ha invertido m\u00e1s de <span class=\"xn-money\">$40 millones<\/span> en la investigaci\u00f3n de enfermedades renales y ayud\u00f3 a crear un panorama en el que ahora existen nuevos tratamientos y m\u00e1s de 60 ensayos de medicamentos intervencionistas para enfermedades renales raras. NephCure es una organizaci\u00f3n ben\u00e9fica p\u00fablica estadounidense exenta de impuestos 501(c)(3).<\/p>","protected":false},"excerpt":{"rendered":"<p>PHILADELPHIA, May 6, 2024\u00a0&#8212; NephCure, a leading nonprofit organization dedicated to finding better treatment options and a cure for rare kidney disease, proudly announces the launch of its new website, &#8230; <a title=\"Presentamos un nuevo destino para la comunidad de enfermedades renales raras\" class=\"read-more\" href=\"https:\/\/nephcure.org\/es\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/\" aria-label=\"Leer m\u00e1s sobre Presentamos un nuevo destino para la comunidad de enfermedades renales raras\">Leer m\u00e1s<\/a><\/p>","protected":false},"author":12083,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[300],"tags":[],"disease-category":[],"resource-type":[260],"treatment-option":[],"hf_cat_post":[537],"class_list":["post-30509","post","type-post","status-publish","format-standard","hentry","category-press-release","resource-type-news"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v28.4 (Yoast SEO v28.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Introducing a New Destination for the Rare Kidney Disease Community - NephCure<\/title>\n<meta name=\"description\" content=\"PHILADELPHIA, May 6, 2024\u00a0-- NephCure, a leading nonprofit organization dedicated to finding better treatment options and a cure for rare kidney disease, - Read more about Introducing a New Destination for the Rare Kidney Disease Community on NephCure.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/nephcure.org\/es\/nephcures-esfuerzos-continuos-para-educar-y-empoderar-a-las-comunidades-en-la-lucha-contra-la-enfermedad-renal-apol1-2\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Introducing a New Destination for the Rare Kidney Disease Community\" \/>\n<meta property=\"og:description\" content=\"PHILADELPHIA, May 6, 2024\u00a0-- NephCure, a leading nonprofit organization dedicated to finding better treatment options and a cure for rare kidney disease, - Read more about Introducing a New Destination for the Rare Kidney Disease Community on NephCure.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/nephcure.org\/es\/nephcures-esfuerzos-continuos-para-educar-y-empoderar-a-las-comunidades-en-la-lucha-contra-la-enfermedad-renal-apol1-2\/\" \/>\n<meta property=\"og:site_name\" content=\"NephCure\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/nephcure\/\" \/>\n<meta property=\"article:published_time\" content=\"2024-05-06T19:22:59+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-10-01T16:35:12+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/nephcure.org\/wp-content\/uploads\/2024\/05\/Site-Image.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"675\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Hillary Frawley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@nephcure\" \/>\n<meta name=\"twitter:site\" content=\"@nephcure\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Hillary Frawley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutos\" \/>\n<!-- \/ Yoast SEO Premium plugin. -->","yoast_head_json":{"title":"Presentamos un nuevo destino para la comunidad de pacientes con enfermedades renales raras: NephCure","description":"FILADELFIA, 6 de mayo de 2024 -- NephCure, una organizaci\u00f3n sin fines de lucro l\u00edder dedicada a encontrar mejores opciones de tratamiento y una cura para la enfermedad renal rara, - Lea m\u00e1s sobre la presentaci\u00f3n de un nuevo destino para la comunidad de enfermedades renales raras en NephCure.","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:\/\/nephcure.org\/es\/nephcures-esfuerzos-continuos-para-educar-y-empoderar-a-las-comunidades-en-la-lucha-contra-la-enfermedad-renal-apol1-2\/","og_locale":"es_MX","og_type":"article","og_title":"Introducing a New Destination for the Rare Kidney Disease Community","og_description":"PHILADELPHIA, May 6, 2024\u00a0-- NephCure, a leading nonprofit organization dedicated to finding better treatment options and a cure for rare kidney disease, - Read more about Introducing a New Destination for the Rare Kidney Disease Community on NephCure.","og_url":"https:\/\/nephcure.org\/es\/nephcures-esfuerzos-continuos-para-educar-y-empoderar-a-las-comunidades-en-la-lucha-contra-la-enfermedad-renal-apol1-2\/","og_site_name":"NephCure","article_publisher":"https:\/\/www.facebook.com\/nephcure\/","article_published_time":"2024-05-06T19:22:59+00:00","article_modified_time":"2024-10-01T16:35:12+00:00","og_image":[{"width":1200,"height":675,"url":"https:\/\/nephcure.org\/wp-content\/uploads\/2024\/05\/Site-Image.jpg","type":"image\/jpeg"}],"author":"Hillary Frawley","twitter_card":"summary_large_image","twitter_creator":"@nephcure","twitter_site":"@nephcure","twitter_misc":{"Escrito por":"Hillary Frawley","Tiempo de lectura":"3 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/#article","isPartOf":{"@id":"https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/"},"author":{"name":"Hillary Frawley","@id":"https:\/\/nephcure.org\/#\/schema\/person\/888138dc7703ee71dc134e639ea6ceed"},"headline":"Introducing a New Destination for the Rare Kidney Disease Community","datePublished":"2024-05-06T19:22:59+00:00","dateModified":"2024-10-01T16:35:12+00:00","mainEntityOfPage":{"@id":"https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/"},"wordCount":525,"publisher":{"@id":"https:\/\/nephcure.org\/#organization"},"articleSection":["Press Release"],"inLanguage":"es"},{"@type":"WebPage","@id":"https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/","url":"https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/","name":"Presentamos un nuevo destino para la comunidad de pacientes con enfermedades renales raras: NephCure","isPartOf":{"@id":"https:\/\/nephcure.org\/#website"},"datePublished":"2024-05-06T19:22:59+00:00","dateModified":"2024-10-01T16:35:12+00:00","description":"FILADELFIA, 6 de mayo de 2024 -- NephCure, una organizaci\u00f3n sin fines de lucro l\u00edder dedicada a encontrar mejores opciones de tratamiento y una cura para la enfermedad renal rara, - Lea m\u00e1s sobre la presentaci\u00f3n de un nuevo destino para la comunidad de enfermedades renales raras en NephCure.","breadcrumb":{"@id":"https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/nephcure.org\/introducing-a-new-destination-for-the-rare-kidney-disease-communitynephcures-ongoing-efforts-to-educate-and-empower-communities-in-the-fight-against-apol1-kidney-disease\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/nephcure.org\/"},{"@type":"ListItem","position":2,"name":"Introducing a New Destination for the Rare Kidney Disease Community"}]},{"@type":"WebSite","@id":"https:\/\/nephcure.org\/#website","url":"https:\/\/nephcure.org\/","name":"NephCure","description":"Para enfermedades renales raras","publisher":{"@id":"https:\/\/nephcure.org\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/nephcure.org\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"es"},{"@type":"Organization","@id":"https:\/\/nephcure.org\/#organization","name":"NephCure","url":"https:\/\/nephcure.org\/","logo":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/nephcure.org\/#\/schema\/logo\/image\/","url":"https:\/\/nephcure.org\/wp-content\/uploads\/2023\/03\/cropped-NephCure-favicon-512x512-1.png","contentUrl":"https:\/\/nephcure.org\/wp-content\/uploads\/2023\/03\/cropped-NephCure-favicon-512x512-1.png","width":512,"height":512,"caption":"NephCure"},"image":{"@id":"https:\/\/nephcure.org\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/nephcure\/","https:\/\/x.com\/nephcure","https:\/\/www.instagram.com\/nephcure\/","https:\/\/www.linkedin.com\/company\/nephcure\/","https:\/\/www.youtube.com\/user\/Nephcure"]},{"@type":"Person","@id":"https:\/\/nephcure.org\/#\/schema\/person\/888138dc7703ee71dc134e639ea6ceed","name":"Hillary Frawley","image":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/secure.gravatar.com\/avatar\/244158db68c4d6cd245457294c7b816f5e5683dbceecd4244d333e8bdee042c3?s=96&d=mm&r=g","url":"https:\/\/secure.gravatar.com\/avatar\/244158db68c4d6cd245457294c7b816f5e5683dbceecd4244d333e8bdee042c3?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/244158db68c4d6cd245457294c7b816f5e5683dbceecd4244d333e8bdee042c3?s=96&d=mm&r=g","caption":"Hillary Frawley"}}]}},"_links":{"self":[{"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/posts\/30509","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/users\/12083"}],"replies":[{"embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/comments?post=30509"}],"version-history":[{"count":0,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/posts\/30509\/revisions"}],"wp:attachment":[{"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/media?parent=30509"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/categories?post=30509"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/tags?post=30509"},{"taxonomy":"disease-category","embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/disease-category?post=30509"},{"taxonomy":"resource-type","embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/resource-type?post=30509"},{"taxonomy":"treatment-option","embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/treatment-option?post=30509"},{"taxonomy":"hf_cat_post","embeddable":true,"href":"https:\/\/nephcure.org\/es\/wp-json\/wp\/v2\/hf_cat_post?post=30509"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}