{"id":243,"date":"2022-02-07T15:17:42","date_gmt":"2022-02-07T14:17:42","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=243"},"modified":"2026-01-13T11:50:28","modified_gmt":"2026-01-13T10:50:28","slug":"teaching-training","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/fr\/our-workgroups\/teaching-training\/","title":{"rendered":"Enseignement et formation (WG8)"},"content":{"rendered":"

Pr\u00e9sident et copr\u00e9sident du groupe de travail <\/h2>\n\n\n\n
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\"\"<\/figure>\n<\/div>\n\n\n\n
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Le professeur Laurence Faivre<\/strong>
(Dijon, France)<\/p>\n<\/div>\n\n\n\n

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\"\"<\/figure>\n<\/div>\n\n\n\n
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Professeur Giuseppe Zampino<\/strong>
(Rome, Italie)<\/p>\n<\/div>\n<\/div>\n\n\n\n

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L'objectif de ce groupe de travail est de soutenir et de d\u00e9velopper de nouvelles activit\u00e9s \u00e9ducatives et de formation consacr\u00e9es aux troubles neurod\u00e9veloppementaux rares et aux malformations cong\u00e9nitales multiples, telles que des ateliers, des conf\u00e9rences, des webinaires, des MOOC, des jeux \u00e9ducatifs, des examens universitaires ou des manuels scolaires.<\/strong><\/p>\n\n\n\n

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Webinaires ERN-ITHACA<\/h2>\n\n\n\n
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<\/p>\n\n\n\n

Le groupe de travail \u00ab Enseignement et formation \u00bb a mis en place un programme de webinaires<\/strong> pour aider les professionnels de sant\u00e9 et les patients \u00e0 acqu\u00e9rir des connaissances hautement sp\u00e9cialis\u00e9es dans le domaine des malformations cong\u00e9nitales rares ou des troubles neurod\u00e9veloppementaux, sans avoir \u00e0 se d\u00e9placer, \u00e0 leur convenance. <\/p>\n<\/div>\n\n\n\n

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\"\"<\/figure>\n<\/div>\n<\/div>\n\n\n\n

Une dizaine de webinaires sont organis\u00e9s chaque ann\u00e9e par des experts de ITHACA, consacr\u00e9s \u00e0 divers troubles ou aspects des soins, tels que la chirurgie f\u0153tale pour les dysraphismes, le d\u00e9pistage n\u00e9onatal, la m\u00e9thodologie des recommandations, le syndrome de Down ou les soins aux personnes \u00e2g\u00e9es.<\/p>\n\n\n\n

Pour \u00e9laborer chaque webinaire, ce groupe de travail accorde une attention particuli\u00e8re aux Contributions du comit\u00e9 consultatif des patients ITHACA<\/strong>, afin que les spectacles restent au moins partiellement accessibles aux patients et \u00e0 leurs proches, lorsqu\u2019ils ne sont pas con\u00e7us pour<\/em> eux.<\/p>\n\n\n\n

Le groupe de travail collabore \u00e9galement avec d'autres organismes de recherche ou de soins, tels que la Soci\u00e9t\u00e9 europ\u00e9enne de neurologie p\u00e9diatrique (EPNS) ou d'autres r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERN), afin de produire webinaires conjoints<\/strong>.<\/p>\n\n\n\n

Les candidatures pour notre programme de webinaires sont ouvertes<\/strong>: si vous souhaitez organiser un webinaire sur un sujet relevant du champ d'application de ITHACA, veuillez consulter ce document document<\/a> pour consulter les consignes et remplir le formulaire de candidature int\u00e9gr\u00e9.<\/p>\n\n\n\n

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Cours en ligne ouverts \u00e0 tous (MOOC)<\/h2>\n\n\n\n
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<\/p>\n\n\n\n

Les MOOC constituent des outils pr\u00e9cieux pour diffuser des connaissances hautement sp\u00e9cialis\u00e9es aupr\u00e8s d'un large public. Ce groupe de travail a pour objectif de soutenir les initiatives li\u00e9es aux MOOC dans le domaine du ITHACA. L'ERN s'attache donc \u00e0 partenaire de deux MOOC<\/strong>: une formation mise au point par l'ancien Programme europ\u00e9en commun sur les maladies rares (EJPRD) et h\u00e9berg\u00e9e par la Fondation Maladies Rares sur Comment diagnostiquer les maladies rares<\/a>, et un cours d'initiation \u00e0 la m\u00e9decine g\u00e9nomique et \u00e0 la bio-informatique<\/a> g\u00e9r\u00e9 par l'Universit\u00e9 Paris-Cit\u00e9. <\/p>\n\n\n\n

Nous mettons notamment \u00e0 la disposition de ce dernier de jeunes experts du programme ITHACA pour animer des \u201c sessions d\u2019accompagnement \u201d (des sessions en ligne permettant aux \u00e9tudiants de poser des questions \u00e0 des experts). Si vous \u00eates stagiaire en g\u00e9n\u00e9tique et que vous souhaitez contribuer au MOOC de cette mani\u00e8re, veuillez contacter anne.hugon@aphp.fr pour plus de d\u00e9tails. Des efforts r\u00e9compens\u00e9s.<\/p>\n<\/div>\n<\/div>\n\n\n\n

<\/div>\n\n\n\n

Conf\u00e9rences<\/h2>\n\n\n\n

Le groupe de travail participe \u00e0 deux conf\u00e9rences consacr\u00e9es \u00e0 la dysmorphologie : La Colloque sur la dysmorphologie \u00e0 Manchester<\/strong> et le Atelier EuroDysmorpho<\/strong>.<\/p>\n\n\n\n

Le Colloque sur la dysmorphologie \u00e0 Manchester<\/a> Il s'agit d'un congr\u00e8s biennal coordonn\u00e9 par l'universit\u00e9 de Manchester, qui rassemble des experts internationaux dans le domaine de la syndromologie g\u00e9nomique. Par le biais de ce groupe de travail, nous contribuons \u00e0 l'organisation du congr\u00e8s et soutenons la participation de jeunes g\u00e9n\u00e9ticiens \u00e0 cet \u00e9v\u00e9nement. La prochaine \u00e9dition de la conf\u00e9rence se tiendra du 16 au 19 novembre 2025 \u2013 \u00e0 Manchester, bien s\u00fbr !<\/p>\n\n\n\n

<\/div>\n\n\n\n
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Congr\u00e8s 2023 sur la dysmorphologie \u00e0 Manchester \u2013 Manchester, Royaume-Uni<\/em><\/p>\n\n\n\n

<\/div>\n\n\n\n

Le Atelier EuroDysmorpho<\/a> (ou Atelier europ\u00e9en sur la dysmorphologie) est le premier rendez-vous europ\u00e9en consacr\u00e9 \u00e0 la dysmorphologie. Il se tient chaque ann\u00e9e depuis 34 ans et est d\u00e9sormais dirig\u00e9 par les professeurs Koen Devriendt, de la KU Leuven, et Alain Verloes, coordinateur du programme ERN-ITHACA \u00e0 l\u2019h\u00f4pital Robert Debr\u00e9. Cet \u00e9v\u00e9nement est enti\u00e8rement organis\u00e9 par l'ERN<\/strong>. Il a pour objectif de r\u00e9unir de jeunes g\u00e9n\u00e9ticiens cliniciens et des dysmorphologues confirm\u00e9s afin qu'ils puissent partager leurs exp\u00e9riences professionnelles et pr\u00e9senter les d\u00e9fis cliniques auxquels ils sont confront\u00e9s. <\/p>\n\n\n\n

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Atelier EuroDysmorpho 2023 \u2013 Ljubljana, Slov\u00e9nie <\/em><\/p>\n\n\n\n

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Dipl\u00f4mes universitaires<\/h2>\n\n\n\n

Ce groupe de travail a pour mission de coordonner la participation de l'ERN aux initiatives universitaires dans le domaine de la g\u00e9n\u00e9tique au niveau de l'Union europ\u00e9enne. <\/p>\n\n\n\n

ITHACA soutient l'organisation de la Certificat europ\u00e9en en g\u00e9n\u00e9tique m\u00e9dicale (ECMGG)<\/a>, qui est le premier dipl\u00f4me europ\u00e9en en g\u00e9n\u00e9tique m\u00e9dicale, et qui est charg\u00e9 d'organiser les r\u00e9unions de pr\u00e9paration \u00e0 l'examen. L'ERN est \u00e9galement impliqu\u00e9 par le biais de la participation de son coordinateur, le professeur Alain Verloes, au conseil d'administration de l'ECMGG.<\/p>\n\n\n\n

Le groupe de travail apporte \u00e9galement son soutien au projet en cours Programme de master europ\u00e9en <\/strong>en proposant au cursus un module complet de cours de g\u00e9n\u00e9tique.<\/p>\n\n\n\n

<\/div>\n\n\n\n

Jeux s\u00e9rieux destin\u00e9s aux professionnels de sant\u00e9<\/h2>\n\n\n\n

Jeux de simulation<\/strong> peuvent constituer d'excellents outils de formation pour les professionnels de sant\u00e9, notamment en mati\u00e8re de maladies rares : quelles doivent \u00eatre les premi\u00e8res mesures \u00e0 prendre en cas de suspicion de maladie rare ? Quels sont les outils de diagnostic les plus pertinents ? Comment annoncer le diagnostic au patient et \u00e0 sa famille ? En plongeant le joueur dans des situations cliniques virtuelles, ces jeux constituent un moyen souvent sous-estim\u00e9 permettant aux professionnels de sant\u00e9 d\u2019apprendre les meilleures pratiques et de d\u00e9velopper leurs comp\u00e9tences relationnelles.<\/p>\n\n\n\n

Ce groupe de travail soutient le d\u00e9veloppement d'une s\u00e9rie de jeux de simulation consacr\u00e9s aux maladies rares, intitul\u00e9e \u00ab Jeux li\u00e9s \u00e0 des syndromes rares<\/strong>, qui s\u2019inscrira dans le cadre d\u2019un programme de formation sur les maladies rares destin\u00e9 aux professionnels de sant\u00e9 peu familiaris\u00e9s avec ce domaine.<\/p>\n\n\n\n

<\/div>\n\n\n\n

Soutien au r\u00e9seau des jeunes g\u00e9n\u00e9ticiens<\/h2>\n\n\n\n

Le Jeunes g\u00e9n\u00e9ticiens<\/a> constituent un r\u00e9seau de jeunes m\u00e9decins ou conseillers en g\u00e9n\u00e9tique, cr\u00e9\u00e9 dans le but de promouvoir la g\u00e9n\u00e9tique humaine, de mettre en relation des stagiaires isol\u00e9s, d'encourager des collaborations ambitieuses et de r\u00e9duire les foss\u00e9s g\u00e9n\u00e9rationnels en mati\u00e8re de technologies ou de connaissances.<\/p>\n\n\n\n

Lanc\u00e9e pour la premi\u00e8re fois sur Facebook en 2018, elle constitue d\u00e9sormais une communaut\u00e9 coordonn\u00e9e de environ 1 500 jeunes professionnels, originaires de plus de 100 pays.<\/strong><\/p>\n\n\n\n

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ITHACA s'engage \u00e0 autonomiser<\/strong> ce groupe enthousiaste de jeunes stagiaires en leur offrant des opportunit\u00e9s lors de r\u00e9unions europ\u00e9ennes ou en les associant \u00e0 divers projets de l\u2019association. De jeunes g\u00e9n\u00e9ticiens font ainsi partie du comit\u00e9 scientifique de l\u2019atelier EuroDysmorpho depuis 2022, ou collaborent avec les groupes de travail \u00ab Lignes directrices \u00bb ou \u00ab Recherche \u00bb \u00e0 la r\u00e9daction de documents de prise en charge, tels que des guides destin\u00e9s aux patients et \u00e0 leurs familles, ou des r\u00e9sum\u00e9s Orphanet.<\/p>","protected":false},"excerpt":{"rendered":"

Workgroup Chair and co-Chair Pr Laurence Faivre(Dijon, France) Pr Giuseppe Zampino(Roma, Italy) The objective of this workgroup is to support and develop new educational and training activities around rare neurodevelopmental disorders and multiple congenital malformations such as workshops, conferences, webinars, MOOCs, learning games, academic exams or textbooks. ERN-ITHACA Webinars The Teaching & Training workgroup has […]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":6017,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"template-pages\/template-page-generic.php","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-243","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nTeaching & Training (WG8) - 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\/fr\/our-workgroups\/teaching-training\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Teaching & Training (WG8) - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Workgroup Chair and co-Chair Pr Laurence Faivre(Dijon, France) Pr Giuseppe Zampino(Roma, Italy) The objective of this workgroup is to support and develop new educational and training activities around rare neurodevelopmental disorders and multiple congenital malformations such as workshops, conferences, webinars, MOOCs, learning games, academic exams or textbooks. 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