{"id":6981,"date":"2021-03-31T09:04:11","date_gmt":"2021-03-31T09:04:11","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/"},"modified":"2021-03-31T09:04:11","modified_gmt":"2021-03-31T09:04:11","slug":"nos-adherimos-al-dia-mundial-de-las-lipodistrofias","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/","title":{"rendered":"Nos adherimos al D\u00eda Mundial de las Lipodistrofias"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Hoy se celebra el D\u00eda Mundial de las Lipodistrofias con el objetivo de sensibilizar sobre la salud p\u00fablica que suponen esta enfermedad poco frecuente, para llevar a cabo acciones de coordinaci\u00f3n con todas las partes implicadas como pacientes, administraci\u00f3n p\u00fablica o profesionales de la salud, para la b\u00fasqueda de recursos. Desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suman a esta jornada para apoyar a todas las personas que conviven con esta patolog\u00eda, a sus familiares y a las entidades del movimiento asociativo.<\/p>\n<p>El D\u00eda Mundial de las Lipodistrofias surge como plataforma para poder desarrollar actividades de referencia, as\u00ed como para emprender, cohesionar e impulsar acciones pol\u00edticas y sociales en distintos lugares de Espa\u00f1a, y Europa, en colaboraci\u00f3n con las alianzas de pa\u00edses iberoamericanos (ALIBER) y la organizaci\u00f3n europea de enfermedades raras ( EURORDIS).<\/p>\n<p>Adem\u00e1s, esta campa\u00f1a es impulsada por EURORDIS, por FEDER y se desarrolla en coordinaci\u00f3n con ALIBER, la Rare diseases international (RDI), la Sociedad espa\u00f1ola de lipodistrofias (SEL) y el Consorcio Europeo de Lipodistrofias (ECLIP).<\/p>\n<p>\u201cEn este d\u00eda, donde la sensibilizaci\u00f3n es la protagonista, desde FEDER queremos mostrar todo nuestra fuerza a las personas que conviven con lipodistrofias y a sus familiares. Adem\u00e1s, recordamos a la sociedad la importancia de las visibilizaci\u00f3n de esta patolog\u00eda para conocer m\u00e1s acerca de sus caracter\u00edsticas.\u201d Afirma Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n.<\/p>\n<p>El movimiento asociativo vinculado a las lipodistrofias trabaja de manera coordinada para mejorar la calidad y esperanza de vida de las personas que conviven con esta patolog\u00eda, fomentando la sensibilizaci\u00f3n, la formaci\u00f3n de profesionales, creando espacios de convivencia, promoviendo la participaci\u00f3n de organismos p\u00fablicos y privados o apoyando la investigaci\u00f3n. Todo esto es posible, gracias al trabajo de entidades como: Asociaci\u00f3n de familiares y afectados de lipodistrofias (AELIP) o la Sociedad Espa\u00f1ola de Lipodistrofias (SEL).<\/p>\n<p><span style=\"font-size: 12pt\">Campa\u00f1a de sensibilizaci\u00f3n por el D\u00eda Mundial<\/span><\/p>\n<p>AELIP, con motivo de esta jornada, ha reclamado la inclusi\u00f3n en el Sistema Nacional de Salud del \u00fanico tratamiento disponible para pacientes con lipodistrofias, ya que, seg\u00fan la Asociaci\u00f3n no ha sido incluido en la prestaci\u00f3n farmac\u00e9utica tras la resoluci\u00f3n negativa de la Comisi\u00f3n Interministerial de Precios.<\/p>\n<p>Adem\u00e1s, en el marco de esta reivindicaci\u00f3n, AELIP ha elaborado una campa\u00f1a para concienciar sobre estas patolog\u00edas, por ello, animan a todo el mundo a sumarse a este d\u00eda, subiendo una fotograf\u00eda con el gesto de L (con el dedo pulgar e \u00edndice de la mano izquierda) a redes sociales, utilizando las etiquetas #UnidosPorLasLipodistrofias #DiaMundialDeLasLipodistrofias2021 #United4Lipodystrophy. Adem\u00e1s, desde AELIP han realizado un video conmemorativo para trasladar la realidad de pacientes y familiares.<\/p>\n<p>Adem\u00e1s, en su p\u00e1gina web animan a la poblaci\u00f3n a unirse a esta jornada a trav\u00e9s de la participaci\u00f3n en actividades, contactando con el ayuntamiento de su localidad para la adhesi\u00f3n a esta jornada o recaudando fondos a trav\u00e9s de una actividad destinada a los pacientes con lipodistrofias.<\/p>\n<p>\u00daltima actualizaci\u00f3n 31\/03\/2021<\/p>\n<p>&nbsp;<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15117-nos-adherimos-al-d%C3%ADa-mundial-de-las-lipodistrofias\" target=\"_blank\" rel=\"noopener\">Nos adherimos al D\u00eda Mundial de las Lipodistrofias<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Hoy se celebra el D\u00eda Mundial de las Lipodistrofias con el objetivo de sensibilizar sobre la salud p\u00fablica que suponen esta enfermedad poco frecuente, para llevar a cabo acciones de coordinaci\u00f3n con todas las partes implicadas como pacientes, administraci\u00f3n p\u00fablica o profesionales de [&hellip;]<\/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-6981","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos adherimos al D\u00eda Mundial de las Lipodistrofias - 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\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos adherimos al D\u00eda Mundial de las Lipodistrofias - 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: Hoy se celebra el D\u00eda Mundial de las Lipodistrofias con el objetivo de sensibilizar sobre la salud p\u00fablica que suponen esta enfermedad poco frecuente, para llevar a cabo acciones de coordinaci\u00f3n con todas las partes implicadas como pacientes, administraci\u00f3n p\u00fablica o profesionales de [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/\" \/>\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=\"2021-03-31T09:04:11+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=\"3 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Nos adherimos al D\u00eda Mundial de las Lipodistrofias\",\"datePublished\":\"2021-03-31T09:04:11+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/\"},\"wordCount\":570,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/\",\"name\":\"Nos adherimos al D\u00eda Mundial de las Lipodistrofias - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#website\"},\"datePublished\":\"2021-03-31T09:04:11+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"breadcrumb\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2021\\\/03\\\/31\\\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/sindromecharge.es\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Nos adherimos al D\u00eda Mundial de las Lipodistrofias\"}]},{\"@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":"Nos adherimos al D\u00eda Mundial de las Lipodistrofias - 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\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/","og_locale":"es_ES","og_type":"article","og_title":"Nos adherimos al D\u00eda Mundial de las Lipodistrofias - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","og_description":"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Hoy se celebra el D\u00eda Mundial de las Lipodistrofias con el objetivo de sensibilizar sobre la salud p\u00fablica que suponen esta enfermedad poco frecuente, para llevar a cabo acciones de coordinaci\u00f3n con todas las partes implicadas como pacientes, administraci\u00f3n p\u00fablica o profesionales de [&hellip;]","og_url":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/","og_site_name":"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","article_publisher":"https:\/\/www.facebook.com\/asociacionsindromecharge","article_published_time":"2021-03-31T09:04:11+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":"3 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/#article","isPartOf":{"@id":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/"},"author":{"name":"Charge","@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"headline":"Nos adherimos al D\u00eda Mundial de las Lipodistrofias","datePublished":"2021-03-31T09:04:11+00:00","mainEntityOfPage":{"@id":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/"},"wordCount":570,"commentCount":0,"keywords":["enfermedades raras"],"articleSection":["noticias"],"inLanguage":"es","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/","url":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/","name":"Nos adherimos al D\u00eda Mundial de las Lipodistrofias - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge","isPartOf":{"@id":"https:\/\/sindromecharge.es\/#website"},"datePublished":"2021-03-31T09:04:11+00:00","author":{"@id":"https:\/\/sindromecharge.es\/#\/schema\/person\/39a60ebe0a2b4d5a11179701e336b039"},"breadcrumb":{"@id":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/31\/nos-adherimos-al-dia-mundial-de-las-lipodistrofias\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/sindromecharge.es\/"},{"@type":"ListItem","position":2,"name":"Nos adherimos al D\u00eda Mundial de las Lipodistrofias"}]},{"@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\/6981","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=6981"}],"version-history":[{"count":0,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/posts\/6981\/revisions"}],"wp:attachment":[{"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/media?parent=6981"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/categories?post=6981"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sindromecharge.es\/index.php\/wp-json\/wp\/v2\/tags?post=6981"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}