{"id":5091,"date":"2024-04-11T17:20:10","date_gmt":"2024-04-11T15:20:10","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=resources&#038;p=5091"},"modified":"2024-10-30T16:36:57","modified_gmt":"2024-10-30T15:36:57","slug":"ern-ithaca-webinar-14-on-innovation-in-newborn-screening-in-europe-part-2","status":"publish","type":"resources","link":"https:\/\/ern-ithaca.eu\/es\/education\/documentation-for-patients\/ern-ithaca-webinar-14-on-innovation-in-newborn-screening-in-europe-part-2\/","title":{"rendered":"Seminario web n.\u00ba 14 de ERN-ITHACA sobre innovaci\u00f3n en el cribado neonatal en Europa \u2013 2.\u00aa parte"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Programa<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Welcome and Introduction,&nbsp;<\/strong>by<strong>&nbsp;<\/strong>Pr. Laurence Faivre, Centre de G\u00e9n\u00e9tique, Dijon (France)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Topic 1 \u2013 Presentation of 4 European genomic NGS pilot projects in Europe<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>The First Steps Greek program, and its interaction with Screen4Care and BeginNGS,\u00a0<\/strong>by Pr. Petros Tsipouras, Rady Children\u2019s Institute\u00a0for\u00a0Genomic Medicine,\u00a0Director Beginning Newborn Sequencing\u00a0(Greece)<\/li>\n\n\n\n<li><strong>The Danish approach: Decreasing the number of false positive newborns and improving newborn screening \u2013 using genetic testing in a retrospective cohort, and further ambitions (PREDiSPOSED project),\u00a0<\/strong>by Alberte Lundquist, PhD, Centre for Inherited Metabolic Diseases, Departments of Paediatrics and Clinical Genetics, Copenhagen University Hospital (Danemark)<\/li>\n\n\n\n<li><strong>The GenNatal Spanish program<\/strong>,&nbsp;by Dr. Francesc Palau Mart\u00ednez, Genetic Medicine Service of the Hospital Sant Joan de D\u00e9u, Barcelona (Spain)<\/li>\n\n\n\n<li><strong>The New Lives German program,\u00a0<\/strong>by<strong>\u00a0<\/strong>Dr Nicola Dikow, Institute of Human Genetics, at Heidelberg University. (Germany)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Topic 2 \u2013 The Rare Barometer survey on the opinion of people living with a rare disease on NBS,&nbsp;<\/strong>by &nbsp;Jessie Dubief, Social Research Director, EURORDIS<\/p>\n\n\n\n<div style=\"height:52px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\">Webinar recordings<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Main recording starting from talk #3<\/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=\"ERN ITHACA Webinar 14 on Innovation in Newborn Screening across Europe  Part 2\" width=\"640\" height=\"360\" src=\"https:\/\/www.youtube.com\/embed\/4PYXrN-9N9k?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:52px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Full recording of Dr. Alberte Lundquist&#8217;s talk on <strong>The Danish approach: Decreasing the number of false positive newborns and improving newborn screening \u2013 using genetic testing in a retrospective cohort, and further ambitions (PREDiSPOSED project)<\/strong>:<\/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=\"ERN-ITHACA Webinar on Newborn screening, talk by Alberte Lundquist\" width=\"640\" height=\"360\" src=\"https:\/\/www.youtube.com\/embed\/XWiAgc6Vg1A?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<div style=\"height:52px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">You can dowload <a href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/04\/2024-04-09-Webinar_-Innovation-in-Newborn-Screening-across-Europe-Part-2_-Fusion.pdf\">AQU\u00cd<\/a> the webinar&#8217;s entire powerpoint.<\/p>","protected":false},"excerpt":{"rendered":"<p>Program Welcome and Introduction,&nbsp;by&nbsp;Pr. Laurence Faivre, Centre de G\u00e9n\u00e9tique, Dijon (France) Topic 1 \u2013 Presentation of 4 European genomic NGS pilot projects in Europe Topic 2 \u2013 The Rare Barometer survey on the opinion of people living with a rare disease on NBS,&nbsp;by &nbsp;Jessie Dubief, Social Research Director, EURORDIS Webinar recordings Main recording starting from [&hellip;]<\/p>\n","protected":false},"featured_media":5930,"template":"","tags":[],"resources-type":[17],"class_list":["post-5091","resources","type-resources","status-publish","has-post-thumbnail","hentry","resources-type-webinar"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>ERN-ITHACA Webinar 14 on Innovation in newborn screening in Europe - part 2 - ERN ITHACA<\/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:\/\/ern-ithaca.eu\/es\/education\/documentation-for-patients\/ern-ithaca-webinar-14-on-innovation-in-newborn-screening-in-europe-part-2\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ERN-ITHACA Webinar 14 on Innovation in newborn screening in Europe - part 2 - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Program Welcome and Introduction,&nbsp;by&nbsp;Pr. 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