{"id":110957,"date":"2017-04-29T10:43:00","date_gmt":"2017-04-29T08:43:00","guid":{"rendered":"https:\/\/medios.uchceu.es\/actualidad-ceu\/?p=110957"},"modified":"2023-03-14T12:40:22","modified_gmt":"2023-03-14T11:40:22","slug":"hm-the-queen-of-spain-opens-the-4th-international-conference-on-rare-diseases","status":"publish","type":"post","link":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/hm-the-queen-of-spain-opens-the-4th-international-conference-on-rare-diseases\/","title":{"rendered":"HM the Queen of Spain opens the 4th International Conference on Rare Diseases"},"content":{"rendered":"<p><a href=\"https:\/\/www.enfermedades-raras.org\/\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>FEDER<\/strong><\/a>\u00a0and <strong>University\u00a0CEU Cardenal Herrera<\/strong>, together with\u00a0<strong>Sanofi Genzyme<\/strong>, gathered more than 250 people from the educational community for the\u00a0<a href=\"https:\/\/www.uchceu.es\/actividades\/2017\/congresos\/iv-congreso-internacional-educativo-sobre-enfermedades-raras\" target=\"_blank\" rel=\"noopener noreferrer\"><strong><em>IV Congreso Internacional Educativo sobre Enfermedades Raras<\/em><\/strong><\/a> (4th International Educational Conference\u00a0on Rare Diseases).<\/p>\n<figure id=\"attachment_102691\" aria-describedby=\"caption-attachment-102691\" style=\"width: 1933px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-102691\" src=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/FMM9534-e1493294362404.jpg\" alt=\"\" width=\"1933\" height=\"1294\" srcset=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/FMM9534-e1493294362404.jpg 1933w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/FMM9534-e1493294362404-300x201.jpg 300w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/FMM9534-e1493294362404-768x514.jpg 768w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/FMM9534-e1493294362404-696x466.jpg 696w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/FMM9534-e1493294362404-1068x715.jpg 1068w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/FMM9534-e1493294362404-627x420.jpg 627w\" sizes=\"auto, (max-width: 1933px) 100vw, 1933px\" \/><figcaption id=\"caption-attachment-102691\" class=\"wp-caption-text\">SM la Reina, con alumnos del Colegio CEU San Pablo de Murcia.<\/figcaption><\/figure>\n<p><a href=\"https:\/\/www.enfermedades-raras.org\/\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>FEDER<\/strong><\/a>\u00a0and <a href=\"https:\/\/www.uchceu.com\/en\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>University CEU Cardenal Herrera<\/strong><\/a>\u00a0gathered more than 250 people for the <strong>4th International Educational Conference\u00a0on Rare Diseases<\/strong> in Alfara del Patriarca (Valencia). Her Majesty the Queen of Spain took part in this Congress held in the CEU-UCH Faculty of Health Sciences organized together with Sanofi Genzyme and under the motto \u201cBuilding networks, consolidating projects towards an inclusive society.\u201d The fourth edition of this meeting is focused on <strong>children affected by rare diseases<\/strong> and the good practices developed in 10 educational centres in Spain.<\/p>\n<p><iframe loading=\"lazy\" title=\"Resumen del IV Congreso Internacional Educativo sobre Enfermedades Raras 2017\" width=\"696\" height=\"392\" src=\"https:\/\/www.youtube.com\/embed\/S8YOwme3K2g?feature=oembed&#038;enablejsapi=1&#038;origin=https:\/\/medios.uchceu.es\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p><a href=\"https:\/\/www.flickr.com\/photos\/uchceu\/sets\/72157679874297014\/\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>Photo Gallery<\/strong><\/a>\u00a0<strong>of the IV Congreso Educativo sobre Enfermedades Raras, on Flickr.<\/strong><\/p>\n<p><strong>TVE: La Reina inaugura en el CEU el Congreso Educativo sobre Enfermedades Raras<\/strong><\/p>\n<p>The institutional opening was the responsibility of\u00a0<a href=\"https:\/\/www.ceu.es\/ceu\/organizacion.php\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>Carlos Romero<\/strong><\/a>, Great Chancellor of the University CEU-UCH\u00a0and chairman of the Foundation CEU San Pablo,\u00a0<strong>Juan Carri\u00f3n<\/strong>, chairman of FEDER and its Foundation and\u00a0<strong>Fide Mir\u00f3n<\/strong>, deputy chairman of FEDER, as master of ceremonies. The <strong>President\u00a0of the CEU San Pablo University Foundation<\/strong>,\u00a0<a href=\"https:\/\/www.ceu.es\/ceu\/organizacion.php\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>Carlos Romero<\/strong><\/a>, underlined that \u201cthe work of a group of researchers from the university CEU Cardenal Herrera alongside with FEDER has reached the youngest students from CEU campuses in Spain. Thanks to this meeting we created a network among our Primary and Secondary school pupils, their teachers, students of Education Degrees and researchers in order to work together to create an <strong>inclusive education for rare diseases patients<\/strong> and fulfill\u00a0our founding mission of serving society through education.\u201d<\/p>\n<div class=\"mceTemp\"><\/div>\n<figure id=\"attachment_102692\" aria-describedby=\"caption-attachment-102692\" style=\"width: 2209px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-102692\" src=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-fecer-ceu-uch-3.jpg\" alt=\"\" width=\"2209\" height=\"1474\" srcset=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-fecer-ceu-uch-3.jpg 2209w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-fecer-ceu-uch-3-300x200.jpg 300w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-fecer-ceu-uch-3-768x512.jpg 768w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-fecer-ceu-uch-3-696x464.jpg 696w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-fecer-ceu-uch-3-1068x713.jpg 1068w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-fecer-ceu-uch-3-629x420.jpg 629w\" sizes=\"auto, (max-width: 2209px) 100vw, 2209px\" \/><figcaption id=\"caption-attachment-102692\" class=\"wp-caption-text\">SM la Reina, con el equipo directivo del CEU, en el IV Congreso Educativo sobre Enfermedades Raras.<\/figcaption><\/figure>\n<p>Juan Carri\u00f3n underlined that \u201cinclusion is the main tool to create a responsible and sensitive society towards people affected by uncommon diseases or potentially affected by rare diseases and still waiting for a diagnosis\u201d. He also stated \u201cthere is still a lot to do but we witnessed advances reflected in this new edition of the Congress\u201d. <strong>Her Majesty the Queen of Spain shared these advances<\/strong> with the educational community and Carri\u00f3n acknowledged her commitment thanking her for \u201cbelieving in our cause, sharing it in occasions such as this Congress, witnessing the advances since the beginning. Thank you for trusting in our work, a mission which started 18 years ago\u201d.<\/p>\n<p>Moreover, in order to provide a global perspective, the Congress gathered representatives from the public administration such as Mario Garc\u00e9s, Viceminister of Social Services and Equal Opportunities, Juan Carlos Moragues, Government Delegate in the Valencian Community, Carmen Mont\u00f3n, Minister of Health in the Valencian Community and Lloren\u00e7 Rodado, Mayor of Alfara del Patriarca.<\/p>\n<figure id=\"attachment_99701\" aria-describedby=\"caption-attachment-99701\" style=\"width: 973px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-99701\" src=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2015\/04\/alumnas-e-investigadores-CEU-congreso-FEDER-con-Reina.jpg\" alt=\"\" width=\"973\" height=\"568\" srcset=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2015\/04\/alumnas-e-investigadores-CEU-congreso-FEDER-con-Reina.jpg 973w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2015\/04\/alumnas-e-investigadores-CEU-congreso-FEDER-con-Reina-300x175.jpg 300w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2015\/04\/alumnas-e-investigadores-CEU-congreso-FEDER-con-Reina-696x406.jpg 696w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2015\/04\/alumnas-e-investigadores-CEU-congreso-FEDER-con-Reina-719x420.jpg 719w\" sizes=\"auto, (max-width: 973px) 100vw, 973px\" \/><figcaption id=\"caption-attachment-99701\" class=\"wp-caption-text\">Estudiantes de la CEU-UCH e investigadores de OBSER, con la Reina Letizia, en el II Congreso Escolar de Enfermedades Raras de FEDER.<\/figcaption><\/figure>\n<p><strong>50 initiatives with a shared focus: coordination<\/strong><\/p>\n<p>As Carri\u00f3n underlined \u201cin this year\u2019s edition we presented the highest number of good practice\u2019s examples, almost 50 with more and more involvement of the whole education community.\u201d During the Congress the focus has been on <strong>18 good practices w<\/strong>ith a shared main idea: coordination among actors for an <strong>inclusive education<\/strong>.<\/p>\n<p>From this perspective, the projects analysed aim at stopping discrimination, optimising resources and guaranteeing educational continuity for students affected by rare diseases. Among those projects, <strong><a href=\"https:\/\/www.ceu.es\/centros\/colegios.php\" target=\"_blank\" rel=\"noopener noreferrer\">5 come from CEU schools in Valencia, Alicante, Murcia, Madrid and Barcelona<\/a> and others were proposals from students of the CEU-UCH<a href=\"https:\/\/www.uchceu.es\/estudios\/grado\/educacion-primaria\" target=\"_blank\" rel=\"noopener noreferrer\"> Degree in Primary Education<\/a><\/strong>.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-102694\" src=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-4.jpg\" alt=\"\" width=\"2209\" height=\"1473\" srcset=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-4.jpg 2209w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-4-300x200.jpg 300w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-4-768x512.jpg 768w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-4-696x464.jpg 696w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-4-1068x712.jpg 1068w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-4-630x420.jpg 630w\" sizes=\"auto, (max-width: 2209px) 100vw, 2209px\" \/><\/p>\n<p><strong>Rare diseases in the Valencian Community<\/strong><\/p>\n<p>The opening conference was focused on the importance of the Health Assistance Protocol for students with chronic health conditions during class hours, which came into effect for the first time at the beginning of this academic year. Carlos Fluix\u00e1 Carrascosa, General Deputy Director of Health Care Planning in the Health Department, was the person in charge of the explanation of the main aspects of this Protocol. The Congress especially focused on the group in the Valencian Community, which has 172.000 cases of rare diseases in its Information System for Rare Diseases. This Community is represented by 31 patients\u2019 organisations grouped in a FEDER delegation for the Valencian Community.<\/p>\n<p><strong>Research: the key to an educational development<\/strong><\/p>\n<p>One of the main novelties of this fourth edition has been the key role played by research, the main challenge for <strong>FEDER<\/strong> this year and symbol of its campaign for the Rare Disease International Day \u201cResearch is our hope\u201d. This Conference\u00a0emphasized the need to promote research, even social research that, as Fide Mir\u00f3n reminded, has to be developed \u201cwith a comprehensive approach, a network work among all the actors involved: public sector, private sector, citizens, universities, businesses and patients\u2019 associations\u201d. This need is evident when it comes to teaching because \u201cwe\u2019ll be able to implement specific campaigns to meet the educational needs of our pupils only if we know what we are facing\u201d.<\/p>\n<p>The <a href=\"https:\/\/www.uchceu.es\/grupos-lineas-investigacion\/gidyc-grupo-de-investigacion-en-discapacidad-y-comunicacion\" target=\"_blank\" rel=\"noopener noreferrer\"><em><strong>Grupo de Investigaci\u00f3n en Discapacidad y Comunicaci\u00f3n<\/strong><\/em><\/a> (GYDIC)\u00a0from CEU-UCH which managed in the last two years the <em>Observatorio de Enfermedades Raras<\/em> (OBSER) and has been developing the technical aspects of the study <a href=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/mas-de-250-personas-se-dan-cita-en-el-iv-congreso-internacional-educativo-para-dar-respuesta-a-la-inclusion-en-enfermedades-raras\/\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>ENSERio by FEDER and CREER<\/strong><\/a> on social and medical needs of rare diseases patients in Spain, actively collaborated in the organization of the Conference.<\/p>\n<div class=\"mceTemp\"><\/div>\n<figure id=\"attachment_102693\" aria-describedby=\"caption-attachment-102693\" style=\"width: 2209px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-102693\" src=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2.jpg\" alt=\"\" width=\"2209\" height=\"1474\" srcset=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2.jpg 2209w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2-300x200.jpg 300w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2-768x512.jpg 768w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2-696x464.jpg 696w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2-1068x713.jpg 1068w, https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2-629x420.jpg 629w\" sizes=\"auto, (max-width: 2209px) 100vw, 2209px\" \/><figcaption id=\"caption-attachment-102693\" class=\"wp-caption-text\">Cinco colegios del CEU han presentado sus propuestas al Congreso.<\/figcaption><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>FEDER\u00a0and University\u00a0CEU Cardenal Herrera, together with\u00a0Sanofi Genzyme, gathered more than 250 people from the educational community for the\u00a0IV Congreso Internacional Educativo sobre Enfermedades Raras (4th International Educational Conference\u00a0on Rare Diseases). FEDER\u00a0and University CEU Cardenal Herrera\u00a0gathered more than 250 people for the 4th International Educational Conference\u00a0on Rare Diseases in Alfara del Patriarca (Valencia). Her Majesty the [&hellip;]<\/p>\n","protected":false},"author":7,"featured_media":102693,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_uag_custom_page_level_css":"","footnotes":""},"categories":[3,4,5,1410,12,31,1793,39,1751],"tags":[180,1799,206,1800],"class_list":["post-110957","post","type-post","status-publish","format-standard","has-post-thumbnail","category-actualidad-cientifica","category-ciencias-de-la-salud-actualidad-cientifica","category-comunicacion-actualidad-cientifica","category-es-noticia","category-gente-ceu","category-nota-de-prensa-valencia","category-x-slider-home-en","category-x-slider-investigacion","category-x-slider-investigacion-en","tag-facultad-humanidades-y-ciencias-de-la-comunicacion","tag-grado-educacion-infantil-en","tag-grado-educacion-primaria","tag-grado-educacion-primaria-en"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>HM the Queen of Spain opens the 4th International Conference on Rare Diseases<\/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:\/\/medios.uchceu.es\/actualidad-ceu\/en\/hm-the-queen-of-spain-opens-the-4th-international-conference-on-rare-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"HM the Queen of Spain opens the 4th International Conference on Rare Diseases\" \/>\n<meta property=\"og:description\" content=\"FEDER\u00a0and University\u00a0CEU Cardenal Herrera, together with\u00a0Sanofi Genzyme, gathered more than 250 people from the educational community for the\u00a0IV Congreso Internacional Educativo sobre Enfermedades Raras (4th International Educational Conference\u00a0on Rare Diseases). FEDER\u00a0and University CEU Cardenal Herrera\u00a0gathered more than 250 people for the 4th International Educational Conference\u00a0on Rare Diseases in Alfara del Patriarca (Valencia). Her Majesty the [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/hm-the-queen-of-spain-opens-the-4th-international-conference-on-rare-diseases\/\" \/>\n<meta property=\"og:site_name\" content=\"Actualidad CEU\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/UCHCEU\" \/>\n<meta property=\"article:published_time\" content=\"2017-04-29T08:43:00+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-03-14T11:40:22+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/medios.uchceu.es\/actualidad-ceu\/wp-content\/uploads\/sites\/2\/2017\/04\/congreso-feder-ceu-uch-2.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2209\" \/>\n\t<meta property=\"og:image:height\" content=\"1474\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Elisa Marco\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta 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Her Majesty the&hellip;","_links":{"self":[{"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/posts\/110957","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/comments?post=110957"}],"version-history":[{"count":5,"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/posts\/110957\/revisions"}],"predecessor-version":[{"id":157318,"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/posts\/110957\/revisions\/157318"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/media\/102693"}],"wp:attachment":[{"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/media?parent=110957"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/categories?post=110957"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medios.uchceu.es\/actualidad-ceu\/en\/wp-json\/wp\/v2\/tags?post=110957"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}