{"id":2418,"date":"2023-01-23T17:02:50","date_gmt":"2023-01-23T16:02:50","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=events&#038;p=2418"},"modified":"2023-02-02T11:25:37","modified_gmt":"2023-02-02T10:25:37","slug":"ern-ithaca-webinar-6","status":"publish","type":"events","link":"https:\/\/ern-ithaca.eu\/es\/events-news\/upcoming-events\/ern-ithaca-webinar-6\/","title":{"rendered":"ERN-ITHACA Webinar #6 &#8220;Innovation in Newborn Screening across Europe&#8221;"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Webinars #6 on Tuesday 21st of March 5pm-6.30 pm French time<\/strong> <strong>\u201cERN ITHACA Innovation in Newborn Screening across Europe \u201c<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Chaired by Pr Laurence FAIVRE, Workgroup Teaching and Education<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">***<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>With this webinar about newborn screening (NBS), we will present two European pilot programs to extend NBS with a genomic approach, discussing on technical, clinical, and ethical aspects. We will also present an innovative research project to accelerate rare disease diagnosis, with a pillar focused on NBS, and the voice of patients. &nbsp;Finally, we will briefly present a research project aiming at studying the acceptability of the expending NBS in a European country.<\/em><\/p>\n\n\n\n<div style=\"height:25px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Bienvenida e introducci\u00f3n <\/strong>\u2013 (5.00-5.05 pm)<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Pr. Laurence Faivre, Centre de G\u00e9n\u00e9tique et Centre de R\u00e9f\u00e9rence Anomalies du D\u00e9veloppement et Syndromes Malformatifs, Dijon (France)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Topic 1 &#8211;<\/strong> <strong>Presentation of 2 European NGS pilot projects in Europe&nbsp; (<\/strong>5.05-5.35 pm)<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>The UK 100.000 genome project in newborn screening<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Dr. David Bick, Newborn Genomes Programs at Genomics England, London (England)<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>The Netherland pilot NGS extended newborn screening<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Dr. Marcel Nelen, Genome Diagnostics Center UMC, Utrecht (Netherlands)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Topic 2 &#8211; <\/strong><strong>Presentation of the newborn screening axis of the Screen4Care project<\/strong> (5.35-5.50 pm)<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Pr. Alessandra Ferlini, Medical Genetics Unit, S.Anna University Hospital, Ferrara (Italy)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Topic 3<\/strong> \u2013 <strong>The Eurordis position statement on extended newborn screening<\/strong> (5.50-6.05 pm)<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Gulcin Gumus, Research &amp; Policy Project Manager, EURORDIS, Barcelone (France)<strong><\/strong><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Topic 4<\/strong> \u2013<strong>The SeDeN project: a study of the acceptability of professionals and the population in France before setting up a pilot project<\/strong> (6.05-6.15 pm)<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Dr. Camille Level, Study engineer in health economics at Dijon Bourgogne University Hospital, Dijon (France)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Discussion time (<\/em>6.15-6.30 pm)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Conclusi\u00f3n con los ponentes y el moderador<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Descargar <a href=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2023\/02\/Webinar6-program-21-March-2023_-Newborn-Screening-across-Europe_Finalok.pdf\">aqu\u00ed<\/a> the program in a PDF format.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">***<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Register<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">We would appreciate if you could fill out the Form if you plan to participate before March 17th.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-embed\"><div class=\"wp-block-embed__wrapper\">\nhttps:\/\/forms.office.com\/e\/zzkBPKbhnN\n<\/div><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Webinar Team Link to connect<\/strong><\/p>\n\n\n\n<figure class=\"wp-block-embed\"><div class=\"wp-block-embed__wrapper\">\nhttps:\/\/teams.microsoft.com\/l\/meetup-join\/19%3ameeting_Mzc5ZjEyM2YtODhmYi00NjdmLTlkNzgtYmYwMmZlYWQ2YjUy%40thread.v2\/0?context=%7b%22Tid%22%3a%222461c129-d44f-406d-a778-d1a3c4c1527c%22%2c%22Oid%22%3a%223fe3bbab-4860-4b0b-bdc7-6ebc8a2f8f7b%22%7d\n<\/div><\/figure>","protected":false},"featured_media":0,"template":"","categories":[],"tags":[],"class_list":["post-2418","events","type-events","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - 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