{"id":4307,"date":"2024-01-30T14:15:17","date_gmt":"2024-01-30T13:15:17","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=events&#038;p=4307"},"modified":"2024-01-30T14:15:56","modified_gmt":"2024-01-30T13:15:56","slug":"ern-ithaca-webinar-14-innovation-in-newborn-screening-across-europe-part-2","status":"publish","type":"events","link":"https:\/\/ern-ithaca.eu\/de\/events-news\/upcoming-events\/ern-ithaca-webinar-14-innovation-in-newborn-screening-across-europe-part-2\/","title":{"rendered":"ERN-ITHACA Webinar #14: Innovation in Newborn Screening across Europe &#8211; Part 2"},"content":{"rendered":"<p class=\"wp-block-paragraph\">In March 2023, The ERN-ITHACA Teaching and Training working group provided a webinar dedicated to newborn screening across Europe. This webinar was a great success and ERN members requested that we organise another one to share more knowledge on the genomic NBS initiatives across Europe.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">With this second webinar, we will present<strong> four additional European pilot programs <\/strong>to extend NBS with a genomic approach. We will also present the voice of patients from <a href=\"https:\/\/www.eurordis.org\/rare-barometer\/english\/\">Eurordis&nbsp;Rare Barometer<\/a>. Finally, we will discuss the technical, clinical, and ethical aspects of such projects.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Chaired by<\/strong>&nbsp;Pr Laurence FAIVRE, Workgroup Teaching and Education<\/p>\n\n\n\n<div style=\"height:36px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"has-text-align-left wp-block-paragraph\">** Program ** <\/p>\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 &#8211; 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 New Lives German program,&nbsp;<\/strong>by<strong>&nbsp;<\/strong>Dr Nicola Dikow, Institute of Human Genetics, at Heidelberg University. (Germany)<\/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 First Steps Greek program, and its interaction with Screen4Care and BeginNGS,&nbsp;<\/strong>by Pr. Petros Tsipouras, Rady Children&#8217;s Institute&nbsp;for&nbsp;Genomic Medicine,&nbsp;Director Beginning Newborn Sequencing&nbsp;(Greece)<\/li>\n\n\n\n<li><strong>The Danish approach: Decreasing the number of false positive newborns and improving newborn screening &#8211; using genetic testing in a retrospective cohort, and further ambitions (PREDiSPOSED project),&nbsp;<\/strong>by Alberte Lundquist, PhD, Centre for Inherited Metabolic Diseases, Departments of Paediatrics and Clinical Genetics, Copenhagen University Hospital (Danemark)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Topic 2 &#8211; 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<p class=\"wp-block-paragraph\"><em>Diskussionszeit&nbsp;<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Conclusion with speakers and moderator<\/strong><\/p>\n\n\n\n<div style=\"height:36px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Online registration <a href=\"https:\/\/events.teams.microsoft.com\/event\/17961f07-f79e-4766-bdf0-118280855a76@2461c129-d44f-406d-a778-d1a3c4c1527c\/registration\">HIER<\/a><\/p>","protected":false},"featured_media":0,"template":"","categories":[],"tags":[],"class_list":["post-4307","events","type-events","status-publish","hentry"],"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: Innovation in Newborn Screening across Europe - Part 2 - ERN ITHACA<\/title>\n<meta name=\"robots\" content=\"noindex, follow\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ERN-ITHACA Webinar #14: Innovation in Newborn Screening across Europe - Part 2 - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"In March 2023, The ERN-ITHACA Teaching and Training working group provided a webinar dedicated to newborn screening across Europe. 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