{"id":6701,"date":"2024-02-21T13:45:00","date_gmt":"2024-02-21T13:45:00","guid":{"rendered":"https:\/\/fundaciomiquelvalls.org\/?p=6701"},"modified":"2024-03-01T09:23:36","modified_gmt":"2024-03-01T09:23:36","slug":"disponible-tota-la-jornada-parlamentaria-per-visibilitzar-lela-del-congres-dels-diputats","status":"publish","type":"post","link":"https:\/\/fundaciomiquelvalls.org\/es\/disponible-tota-la-jornada-parlamentaria-per-visibilitzar-lela-del-congres-dels-diputats\/","title":{"rendered":"Disponible toda la Jornada Parlamentaria para visibilizar la ELA del Congreso de los Diputados"},"content":{"rendered":"\n<p>El 20 de febrero ConELA (entidad que re\u00fane a la mayor\u00eda de asociaciones y fundaciones relacionadas con la ELA de Espa\u00f1a) organiz\u00f3, en el Congreso de los Diputados en Madrid, una Jornada Parlamentaria para visibilizar la ELA y pedir una regulaci\u00f3n que garantice una vida digna en todas las personas afectadas por esta enfermedad, as\u00ed como tambi\u00e9n por sus familias.<\/p>\n\n\n\n<p>El acto tuvo lugar en la Sala Constitucional del Congreso de los Diputados.<\/p>\n\n\n\n<p>Durante toda la ma\u00f1ana se realizaron ponencias y mesas de inter\u00e9s, todas relacionadas en vivencias, necesidades y realidades de la ELA y las personas que la padecen.<\/p>\n\n\n\n<p>Os dejamos los v\u00eddeos a continuaci\u00f3n:<\/p>\n\n\n\n<div style=\"height:25px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>La jornada parlamentaria la abri\u00f3 el vicepresidente de ConELA, Jos\u00e9 Jim\u00e9nez como conductor del acto. La inauguraci\u00f3n estuvo a cargo de Fernando Mart\u00edn, presidente de ConELA y Juan Carlos Unzu\u00e9, nuestro portavoz.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congr\u00e9s Diputats 2024 - Benvinguda\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/AmcvDledpr0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>Tras las presentaciones, turno de Alberto Reyero, asesor de ConELA sobre \u00bfPor qu\u00e9 es necesaria una Ley ELA?: el colectivo de las personas con ELA est\u00e1 excluido del Estado del Bienestar y es necesaria una ley estatal que nos garantice una vida digna.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congr\u00e9s Diputats 2024 - Per qu\u00e8 fa falta una llei ELA?\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/_h0kTt1p9r0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>La primera mesa trat\u00f3 las claves sanitarias en la ELA, fue moderada por Diego Ayuso, secretario general del Consejo General de Enfermer\u00eda y que ha contado con la participaci\u00f3n de expertos en ELA: Francisco R. Jerez \u2013 neum\u00f3logo del Hospital Cl\u00ednico Universitario San Cecilio de Granda \u2013 Daniel Ibiza -trabajador social y CEO de AIUDO- y Marta Redondo \u2013 enfermera del Hospital Universitario San Rafael de Granada-. La mesa tambi\u00e9n ha contado con la participaci\u00f3n del p\u00fablico asistente.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congr\u00e9s Diputats 2024 - Claus sanit\u00e0ries de l&#039;ELA\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/kcpexsCG1lo?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>Potente la ponencia \u201cC\u00f3mo vivimos la enfermedad\u201d a cargo de Esther Portillo y Jaime Lafita: \u201cLos enfermos de ELA estamos excluidos del derecho a la Salud que refleja la Constituci\u00f3n\u201d &#8211; \u201cQueremos seguir disfrutando de la vida\u201d &#8211; \u201cExigimos los cuidados expertos que requiere la ELA\u201d.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congr\u00e9s Diputats 2024 - Com vivim la malaltia?\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/QuNK7kUwMHQ?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>\u00bfC\u00f3mo es vivir con ELA? Lo contaron desde su experiencia compa\u00f1eros y compa\u00f1eras, moderados por M\u00aa Jos\u00e9 Arregui de Fundaci\u00f3n Luz\u00f3n, como Jos\u00e9 Luis Capit\u00e1n, Noem\u00ed Sobrino, Miguel \u00c1ngel Rold\u00e1n, Juan Carlos Unzu\u00e9.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congr\u00e9s Diputats 2024 - Com \u00e9s viure amb ELA?\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/p1d-TE3XpWw?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>Tambi\u00e9n habl\u00f3 de su experiencia y necesidades de las personas afectadas de ELA la directora general de nuestra entidad, Esther Sell\u00e9s.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congr\u00e9s Diputats 2024 - Intervenci\u00f3 Esther Sell\u00e9s\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/yE2tN3HsOBU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>Es el alcalde en La Roda y senador, adem\u00e1s de compa\u00f1ero de la ELA, Juan Ram\u00f3n Amores, quien continu\u00f3 la Jornada destacando que est\u00e1 en la pol\u00edtica para cambiarla.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congres Diputats 2024 - L&#039;experi\u00e8ncia de l&#039;ELA com a pol\u00edtic\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/r4WkamyUt6Q?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>Lectura del manifiesto por la Ley ELA por la compa\u00f1era Noem\u00ed Sobrino de ELA Madrid\u00a0<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congres Diputats 2024 - Manifesto ELA\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/LlmmAO77VvY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><em>\u00bfLey ELA s\u00ed, Ley ELA no? La \u00faltima de las mesas ofreci\u00f3 el punto de vista de la ELA desde los partidos pol\u00edticos: \u201cCompromiso de los partidos pol\u00edticos con la ELA\u201d, moderada por Esther Ruiz, directora de \u201cEmpat\u00eda\u201d. Participaron los portavoces de Sanidad en el Congreso: Pilar Calvo de Junts per Catalunya, Roc\u00edo de Meer de Vox, Rafael Cofi\u00f1o de Sumar, Elvira Velasco de PP y Carmen Mart\u00ednez de PSOE que manifest\u00f3 que el Gobierno est\u00e1 comprometido y trabajando en las modificaciones legislativas que mejoren nuestra atenci\u00f3n.<\/em> <em>Tambi\u00e9n intervini\u00f3 el ministro de Derechos Sociales, Consumo y Agenda 2030, Pablo Bustinduy,\u00a0 fue el encargado de clausurar la jornada parlamentaria. Nos quedamos con su compromiso de trabajar por una mejora de la atenci\u00f3n a las personas afectadas por ELA y garantizar una vida digna.<\/em><\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Jornada sobre ELA Congr\u00e9s Diputats 2024 - Comprom\u00eds dels partits pol\u00edtics amb l&#039;ELA\" width=\"680\" height=\"383\" src=\"https:\/\/www.youtube.com\/embed\/nrzb17uK8BY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ja podeu veure en diferents v\u00eddeos tota la Jornada Parlament\u00e0ria per visibilitzar l&#8217;ELA que va tenir lloc al Congr\u00e9s dels Diputats a Madrid el 20 de febrer.<\/p>\n","protected":false},"author":1,"featured_media":6681,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[90,257],"tags":[91,122],"class_list":["post-6701","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualitat-es","category-jornades-es","tag-ela-es","tag-fundacio-catalana-dela-miquel-valls-es"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - 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