{"id":6993,"date":"2021-04-06T08:46:54","date_gmt":"2021-04-06T08:46:54","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/06\/feder-presente-en-el-i-ciclo-de-seminarios-humanizacion-de-las-enfermedades-raras\/"},"modified":"2021-04-06T08:46:54","modified_gmt":"2021-04-06T08:46:54","slug":"feder-presente-en-el-i-ciclo-de-seminarios-humanizacion-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/06\/feder-presente-en-el-i-ciclo-de-seminarios-humanizacion-de-las-enfermedades-raras\/","title":{"rendered":"FEDER, presente en el I Ciclo de Seminarios &#039;Humanizaci\u00f3n de las Enfermedades Raras&#039;"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El 6 de abril, desde FEDER participaremos en el 1\u00ba Ciclo de seminarios: La humanizaci\u00f3n de las enfermedades raras organizado por SOBI. A trav\u00e9s de la representaci\u00f3n de Fide Mir\u00f3n, nuestra Federaci\u00f3n estar\u00e1 presente en el debate centrado en la actualizaci\u00f3n de la Estrategia de Enfermedades Raras del Sistema Nacional de Salud.<\/p>\n<p>Esta no es la primera vez que FEDER colabora con SOBI ya que, fuimos colaboradores en el documento de reflexiones \u201cLa Humanizaci\u00f3n en las Enfermedades Raras\u201d, resultado de la iniciativa puesta en marcha por SOBI el pasado 2020, a trav\u00e9s de este documento se recoge voces y opiniones de distintos expertos y representantes de pacientes acerca de las necesidades de las personas con enfermedades raras.<\/p>\n<p>En este primer seminario que dar\u00e1 comienzo a las 16:00 horas, estar\u00e1 presente Pablo de Mora, Director General de Sobi Iberia, Julio S\u00e1nchez, Coordinador del proyecto, Beatriz Perales, Directora de Acceso al Mercado, Relaciones Institucionales y Comunicaci\u00f3n de Sobi Iberia, Elvira Velasco, Portavoz del Grupo Parlamentario Popular en la Comisi\u00f3n de Sanidad y Consumo del Congreso de los Diputados, Francesc Palau, Coordinador Cient\u00edfico de la Estrategia Nacional en Enfermedades Raras del Ministerio de Sanidad y Pablo Valdivieso, Presidente de la Sociedad Espa\u00f1ola de Arterioesclerosis.<\/p>\n<p>Desde FEDER agradecemos la confianza de Sobi por contar una vez m\u00e1s con nuestra experiencia, teniendo la oportunidad de trasladar nuestra labor y la de nuestro tejido asociativo.<\/p>\n<p>\u00daltima actualizaci\u00f3n 06\/04\/2021<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15145-feder%2C-presente-en-el-i-ciclo-de-seminarios-humanizaci%C3%B3n-de-las-enfermedades-raras\" target=\"_blank\" rel=\"noopener\">FEDER, presente en el I Ciclo de Seminarios &#039;Humanizaci\u00f3n de las Enfermedades Raras&#039;<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El 6 de abril, desde FEDER participaremos en el 1\u00ba Ciclo de seminarios: La humanizaci\u00f3n de las enfermedades raras organizado por SOBI. A trav\u00e9s de la representaci\u00f3n de Fide Mir\u00f3n, nuestra Federaci\u00f3n estar\u00e1 presente en el debate centrado en la actualizaci\u00f3n 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-6993","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>FEDER, presente en el I Ciclo de Seminarios &#039;Humanizaci\u00f3n de las Enfermedades Raras&#039; - 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\/04\/06\/feder-presente-en-el-i-ciclo-de-seminarios-humanizacion-de-las-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER, presente en el I Ciclo de Seminarios &#039;Humanizaci\u00f3n de las Enfermedades Raras&#039; - 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: &nbsp; El 6 de abril, desde FEDER participaremos en el 1\u00ba Ciclo de seminarios: La humanizaci\u00f3n de las enfermedades raras organizado por SOBI. 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