{"id":4004,"date":"2018-09-27T12:05:07","date_gmt":"2018-09-27T12:05:07","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/09\/27\/elevamos-nuestras-prioridades-a-los-eurodiputados-espanoles-en-bruselas\/"},"modified":"2018-09-27T12:05:07","modified_gmt":"2018-09-27T12:05:07","slug":"elevamos-nuestras-prioridades-a-los-eurodiputados-espanoles-en-bruselas","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/09\/27\/elevamos-nuestras-prioridades-a-los-eurodiputados-espanoles-en-bruselas\/","title":{"rendered":"Elevamos nuestras prioridades a los eurodiputados espa\u00f1oles en Bruselas"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Hemos viajado a Bruselas para presentar nuestras prioridades a la eurodiputada socialista Soledad Cabez\u00f3n y a Miguel \u00c1ngel Capilla, Consejero Pol\u00edtico de la eurodiputada de ciudadanos Carolina Punset. Nuestro movimiento estuvo representado por Alba Ancochea, Directora de nuestra Federaci\u00f3n y Fundaci\u00f3n.<\/p>\n<p>A trav\u00e9s de este espacio, trasladamos la importancia de abordar las enfermedades poco frecuentes a nivel cooperativo mediante la asistencia sanitaria transfronteriza a trav\u00e9s de proyectos como las Redes Europeas de Referencia y la evaluaci\u00f3n de tecnolog\u00edas sanitarias.<\/p>\n<p>Las Redes Europeas de Referencia (ERNs) son redes virtuales que re\u00fanen a proveedores de asistencia sanitaria de toda Europa para hacer frente a esas dolencias complejas o raras que requieren un tratamiento altamente especializado y una gran concentraci\u00f3n de conocimientos y de recursos.<\/p>\n<p>La reuni\u00f3n ha servido para analizar el estado de situaci\u00f3n de la participaci\u00f3n de Espa\u00f1a en este sistema europeo. En concreto, nuestro pa\u00eds participa en 17 de las 24 ERNs que atienden: s\u00edndromes gen\u00e9ticos con riesgo tumoral, c\u00e1nceres raros en adultos, c\u00e1ncer pedi\u00e1trico, enfermedades hematol\u00f3gicas, enfermedades autoinflamatorias y autoinmunes raras, endocrinas raras, metab\u00f3licas raras y hereditarias, epilepsias complejas, neurol\u00f3gicas raras, neuromusculares, anomal\u00edas craneofaciales y enfermedades otorrinolaringol\u00f3gicas raras, dermatol\u00f3gicas, renales, hep\u00e1ticas, transplante infantil, cardiacas y respiratorias.<\/p>\n<p>Por otro lado, en este marco tambi\u00e9n se han abordado la Evaluaci\u00f3n de Tecnolog\u00edas Sanitarias (HTA por sus siglas en ingl\u00e9s). La HTA examina los efectos a largo plazo sobre cualquier tecnolog\u00eda sanitaria existente o nueva, lo que incluye medicamentos, productos sanitarios, procedimientos o sistemas organizativos, evaluando adem\u00e1s las implicaciones m\u00e9dicas, econ\u00f3micas, sociales, \u00e9ticas y legales durante el proceso.&nbsp;A este respecto, Soledad Cabez\u00f3n ha hecho p\u00fablica su postura respecto a la necesidad de acordar criterios homog\u00e9neos que establezcan unas condiciones en las que prime la innovaci\u00f3n incremental y el valor a\u00f1adido en salud.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 27\/09\/2018.<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11189-elevamos-nuestra-prioridades-sobre-redes-europeas-y-evaluaci%C3%B3n-sanitaria-a-los-eurodiputados-espa%C3%B1oles-en-bruselas\" target=\"_blank\">Elevamos nuestras prioridades a los eurodiputados espa\u00f1oles en Bruselas<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Hemos viajado a Bruselas para presentar nuestras prioridades a la eurodiputada socialista Soledad Cabez\u00f3n y a Miguel \u00c1ngel Capilla, Consejero Pol\u00edtico de la eurodiputada de ciudadanos Carolina Punset. Nuestro movimiento estuvo representado por Alba Ancochea, Directora de nuestra Federaci\u00f3n y Fundaci\u00f3n. A [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-4004","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Elevamos nuestras prioridades a los eurodiputados espa\u00f1oles en Bruselas - 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\/09\/27\/elevamos-nuestras-prioridades-a-los-eurodiputados-espanoles-en-bruselas\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Elevamos nuestras prioridades a los eurodiputados espa\u00f1oles en Bruselas - 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; Hemos viajado a Bruselas para presentar nuestras prioridades a la eurodiputada socialista Soledad Cabez\u00f3n y a Miguel \u00c1ngel Capilla, Consejero Pol\u00edtico de la eurodiputada de ciudadanos Carolina Punset. 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