{"id":4280,"date":"2020-02-21T15:52:00","date_gmt":"2020-02-21T15:52:00","guid":{"rendered":"https:\/\/www.ihu-liryc.fr\/cancellation-march-21-day-of-exchange-on-hereditary-rhythmic-diseases\/"},"modified":"2023-02-03T15:26:38","modified_gmt":"2023-02-03T15:26:38","slug":"cancellation-march-21-day-of-exchange-on-hereditary-rhythmic-diseases","status":"publish","type":"post","link":"https:\/\/www.ihu-liryc.fr\/en\/cancellation-march-21-day-of-exchange-on-hereditary-rhythmic-diseases\/","title":{"rendered":"CANCELLATION March 21: day of exchange on hereditary rhythmic diseases"},"content":{"rendered":"\n<p><strong>Hereditary rhythmic diseases at risk of sudden death<\/strong>&#13;\n<br\/><strong>Day of discussion and exchanges between patients, families, health professionals<\/strong><\/p>\n<smartfire-component name='spacer' attributes=\"{&quot;height&quot;:50,&quot;laptopHeight&quot;:45,&quot;tabletHeight&quot;:40,&quot;mobileHeight&quot;:30}\"><\/smartfire-component>\n<p><br\/><strong><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-red-color\">Following the national guidelines to fight the # covid19, we regret to announce the cancellation of this event organized by the reference center for hereditary rhythmic diseases, this Saturday, March 21.<\/mark><\/strong><\/p>\n<smartfire-component name='spacer' attributes=\"{&quot;height&quot;:50,&quot;laptopHeight&quot;:45,&quot;tabletHeight&quot;:40,&quot;mobileHeight&quot;:30}\"><\/smartfire-component>\n<p><br\/>Organized by the reference center for hereditary rhythmic diseases, the main objective of this day is to allow a privileged exchange between patients \/ families of patients and professionals (doctors, IDE, PRC, psychologists) in a place other than the hospital.<\/p>\n\n<p><br\/><strong>This is also an opportunity &#8230;<\/strong><\/p>\n\n<ul class=\"wp-block-list\"><li>To connect patient with patient associations<\/li><li>To inform patients \/ families of patients about hereditary rhythmic pathologies<\/li><li>To answer patients \/ families of patients on their daily life questions<\/li><li>To allow patients \/ families of patients to meet and share their experience<\/li><\/ul>\n\n<p><br\/><strong>Au programme<\/strong><\/p>\n\n<p><br\/><strong>MATIN<\/strong><\/p>\n\n<ul class=\"wp-block-list\"><li>Pr\u00e9sentation de pathologies<\/li><li>Diagnostic, pr\u00e9cautions et traitement des maladies rythmiques<\/li><li>T\u00e9moignages de patients\/familles<\/li><\/ul>\n\n<p><br\/><strong>APRES-MIDI<\/strong><\/p>\n\n<ul class=\"wp-block-list\"><li>Ateliers \u00e0 destination des patients\u00a0: les gestes qui sauvent, la t\u00e9l\u00e9surveillance des proth\u00e8ses cardiaques implantables, questions de la vie quotidienne (assurances, pr\u00eats, permis de conduire\u2026)<\/li><li>Ateliers \u00e0 destination des professionnels<\/li><\/ul>\n<smartfire-component name='spacer' attributes=\"{&quot;height&quot;:50,&quot;laptopHeight&quot;:45,&quot;tabletHeight&quot;:40,&quot;mobileHeight&quot;:30}\"><\/smartfire-component>\n<p>&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;&#8211;<\/p>\n<smartfire-component name='spacer' attributes=\"{&quot;height&quot;:50,&quot;laptopHeight&quot;:45,&quot;tabletHeight&quot;:40,&quot;mobileHeight&quot;:30}\"><\/smartfire-component>\n<p><strong><u>\u00c0 propos du centre de r\u00e9f\u00e9rence des maladies h\u00e9r\u00e9ditaires rythmiques<\/u><\/strong><\/p>\n\n<p><br\/>Labellis\u00e9 centre de r\u00e9f\u00e9rence en mai 2017,\u00a0<strong>le centre de r\u00e9f\u00e9rence des maladies\u00a0rythmiques h\u00e9r\u00e9ditaires\u00a0\u00a0<\/strong>prend en charge les patients atteints de maladies rythmiques h\u00e9r\u00e9ditaires (Syndrome de Brugada, QT long, dysplasie arythmog\u00e8ne du ventricule droit \u2026) et les patients \u00e0 risque de mort subite.<\/p>\n\n<p>Sous la responsabilit\u00e9 du Pr Fr\u00e9d\u00e9ric Sacher,\u00a0 le centre de r\u00e9f\u00e9rence est localis\u00e9 au CHU de Bordeaux, dans l\u2019h\u00f4pital cardiologique \u00e0 Haut-L\u00e9v\u00eaque, dans le service du Pr Michel Ha\u00efssaguerre. Le centre de r\u00e9f\u00e9rence fait partie de la fili\u00e8re nationale de sant\u00e9 nationale maladies rares Cardiogen.<\/p>\n\n<p><br\/>Son expertise dans le traitement des arythmies cardiaques est reconnue \u00e0 l\u2019international et les activit\u00e9s de recherche sur les arythmies cardiaques sont d\u00e9velopp\u00e9es au sein de\u00a0<strong>l\u2019Institut Hospitalo-Universitaire Liryc\u00a0<\/strong>sur deux sites :<\/p>\n\n<p><strong>\u25ba<\/strong>\u00a0<strong>H\u00f4pital Xavier Arnozan\u00a0<\/strong>pour la recherche fondamentale et pr\u00e9-clinique<\/p>\n\n<p><strong>\u25ba<\/strong>\u00a0<strong>H\u00f4pital Haut-L\u00e9v\u00eaque\u00a0<\/strong>pour la recherche clinique.<\/p>\n\n<p><br\/><strong>En 2018, plus de 600 patients atteints de maladies rares ont \u00e9t\u00e9 pris en charge, dont 160 nouveaux patients.<\/strong><\/p>\n\n<p><br\/><strong>Les missions du Centre de R\u00e9f\u00e9rence sont d&#8217;am\u00e9liorer la prise en charge des patients atteints de maladies rythmiques h\u00e9r\u00e9ditaires :<\/strong><\/p>\n\n<ul class=\"wp-block-list\"><li>en s&#8217;assurant sur l&#8217;ensemble du territoire que tous les patients atteints de ce type de pathologies b\u00e9n\u00e9ficient d&#8217;une\u00a0<strong>prise en charge optimale,<\/strong><\/li><li>en garantissant une\u00a0<strong>information m\u00e9dicale claire\u00a0<\/strong>aux patients ainsi qu&#8217;aux professionnels de sant\u00e9 qui seront amen\u00e9s \u00e0 les prendre en charge,<\/li><li>en s&#8217;assurant que le\u00a0<strong>d\u00e9pistage familial\u00a0<\/strong>est correctement r\u00e9alis\u00e9 et que les donn\u00e9es de biologie mol\u00e9culaire sont mises \u00e0 disposition des patients, de leurs familles et des personnels soignants,<\/li><li>en mettant en place ou en participant \u00e0 des \u00e9tudes visant \u00e0 am\u00e9liorer la compr\u00e9hension et les\u00a0<strong>strat\u00e9gies th\u00e9rapeutiques\u00a0<\/strong>dans ces pathologies.<\/li><\/ul>\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Hereditary rhythmic diseases at risk of sudden death&#13; Day of discussion and exchanges between patients, families, health professionals Following the national guidelines to fight the # covid19, we regret to announce the cancellation of this event organized by the reference center for hereditary rhythmic diseases, this Saturday, March 21. Organized by the reference center for [&hellip;]<\/p>\n","protected":false},"author":10,"featured_media":2161,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[29],"tags":[],"class_list":["post-4280","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>CANCELLATION March 21: day of exchange on hereditary rhythmic diseases - IHU Liryc<\/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:\/\/www.ihu-liryc.fr\/en\/cancellation-march-21-day-of-exchange-on-hereditary-rhythmic-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"CANCELLATION March 21: day of exchange on hereditary rhythmic diseases - IHU Liryc\" \/>\n<meta property=\"og:description\" content=\"Hereditary rhythmic diseases at risk of sudden death&#013; Day of discussion and exchanges between patients, families, health professionals Following the national guidelines to fight the # covid19, we regret to announce the cancellation of this event organized by the reference center for hereditary rhythmic diseases, this Saturday, March 21. 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