{"id":13510,"date":"2021-02-25T16:37:59","date_gmt":"2021-02-25T15:37:59","guid":{"rendered":"https:\/\/www.vivreplushollister.com\/stomie\/?p=13510"},"modified":"2021-10-06T11:09:07","modified_gmt":"2021-10-06T09:09:07","slug":"journee-internationale-des-maladies-rares-28-fevrier-2021","status":"publish","type":"post","link":"https:\/\/www.vivreplushollister.com\/stomie\/journee-internationale-des-maladies-rares-28-fevrier-2021\/","title":{"rendered":"Journ\u00e9e Internationale des Maladies Rares [28 F\u00e9vrier 2021]"},"content":{"rendered":"<p><iframe loading=\"lazy\" title=\"Rare Disease Day 2021 official video\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/3bxaP9FJKnk?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><\/p>\n<p>&nbsp;<\/p>\n<p>La journ\u00e9e internationale des maladie rares a \u00e9t\u00e9 mise en place en 2008 pour la premi\u00e8re fois, un 29 F\u00e9vrier. Cette date \u00e9tant rare, elle a dor\u00e9navant lieu le dernier jour du mois de F\u00e9vrier, soit cette ann\u00e9e le dimanche 28 F\u00e9vrier.<\/p>\n<p>De nombreux \u00e9v\u00e8nements sont organis\u00e9s en pr\u00e9sentiel\u00a0chaque ann\u00e9e pour mettre en lumi\u00e8re ces maladies aupr\u00e8s du grand public mais aussi des d\u00e9cideurs et de faire comprendre l&rsquo;impact de ces maladies sur le quotidien des personnes concern\u00e9es.<\/p>\n<p>Beaucoup de ces journ\u00e9es sont \u00e0 l&rsquo;initiative <a href=\"https:\/\/www.eurordis.org\/\" target=\"_blank\" rel=\"noopener\">d\u2019<strong>Eurordis<\/strong><\/a>\u00a0 (Rare Diseases Europe) dans plus de 50 pays.<\/p>\n<p>Les <a href=\"https:\/\/www.fimatho.fr\/\" target=\"_blank\" rel=\"noopener\"><strong>Fili\u00e8res de Sant\u00e9 Maladies Rares<\/strong><\/a> (structure mise en place par le Minist\u00e8re des Solidarit\u00e9s et de la Sant\u00e9) s\u2019associent g\u00e9n\u00e9ralement pour aller \u00e0 la rencontre du grand public en organisant des actions de sensibilisation comme par exemple dans les gares.<\/p>\n<h5 style=\"text-align: center;\">Aujourd&rsquo;hui, plus de 300 millions de personnes vivent avec une maladie rare*.<\/h5>\n<h3><span style=\"color: #333333;\">Quels \u00e9v\u00e8nements en 2021 ?<\/span><\/h3>\n<p>En raison de la situation sanitaire actuelle, les \u00e9v\u00e8nements en pr\u00e9sentiel sont limit\u00e9s mais de nombreuses actions seront tout de m\u00eame mises en place comme des conf\u00e9rences en ligne organis\u00e9es par des Centres Hospitaliers fran\u00e7ais, des campagnes de sensibilisation sur les r\u00e9seaux sociaux ou des d\u00e9bats en LIVE.<\/p>\n<p>Retrouvez le programme des acteurs majeurs sur le site de Fili\u00e8re Sant\u00e9 Maladie Rares (FIMATHO): <a href=\"https:\/\/www.fimatho.fr\/evenements\/191-journee-internationale-des-maladies-rares-2021\" target=\"_blank\" rel=\"noopener\">https:\/\/www.fimatho.fr\/evenements\/191-journee-internationale-des-maladies-rares-2021<\/a><\/p>\n<p>Voici, \u00e0 titre indicatif, une liste non exhaustive d&rsquo;\u00e9v\u00e8nements pr\u00e9vus cette ann\u00e9e:<\/p>\n<ul>\n<li>La plateforme d&rsquo;expertise maladies rares du GHU APHP Nord organisera une <strong>conf\u00e9rence en ligne<\/strong> le <strong>mardi 02 mars de 13h \u00e0 15h<\/strong> sur le <strong>parcours patients<\/strong>. Elle sera divis\u00e9e en 3 parties:\n<ol>\n<li>Education th\u00e9rapeutique,<\/li>\n<li>Liens ville\/h\u00f4pital,<\/li>\n<li>Transition.<\/li>\n<\/ol>\n<\/li>\n<\/ul>\n<p><a href=\"https:\/\/www.fimatho.fr\/evenements\/198-webinaire-sur-le-parcours-patients-plateforme-d-expertise-maladies-rares-ghu-aphp-nord\" target=\"_blank\" rel=\"noopener\">Plus d&rsquo;informations ici<\/a><\/p>\n<ul>\n<li>La Commission maladies rares du CHU Grenoble Alpes organisera une <strong>conf\u00e9rence en ligne<\/strong>\u00a0le\u00a0<strong>vendredi 26 f\u00e9vrier 2021 \u00e0 18 h 20<\/strong>\u00a0: <strong>Les maladies rares, de la naissance \u00e0 l\u2019\u00e2ge adulte. <\/strong>Elle sera divis\u00e9e en 3 parties:<\/li>\n<\/ul>\n<ol>\n<li style=\"list-style-type: none;\">\n<ol>\n<li>D\u00e9pistage n\u00e9onatal , quoi de neuf !<\/li>\n<li>Etre un adolescent quand on est atteint d\u2019une maladie rare<\/li>\n<li>Associations de patients, pourquoi faire\u00a0?<\/li>\n<\/ol>\n<\/li>\n<\/ol>\n<p><a href=\"https:\/\/www.chu-grenoble.fr\/content\/journee-internationale-des-maladies-rares-2021-conference-en-ligne-grand-public?fbclid=IwAR0e9_M-1t9a_KNNAE0xf5XDVtH3syhOSdzZ4P71SBuryoWR1ZnQ7lGY9Sc\" target=\"_blank\" rel=\"noopener\">Plus d&rsquo;informations ici<\/a><\/p>\n<p>Cette conf\u00e9rence sera diffus\u00e9e en direct sur <a href=\"https:\/\/www.youtube.com\/c\/CHUGrenobleAlpesLaTronche\" target=\"_blank\" rel=\"noopener\">la cha\u00eene Youtube<\/a> et les r\u00e9seaux sociaux du CHU Grenoble Alpes.<\/p>\n<ul>\n<li><strong>Samedi 27 et dimanche 28 f\u00e9vrier, de 10h \u00e0 17h<\/strong>. L&rsquo;institut Imagine, l&rsquo;H\u00f4pital Necker-Enfants malades AP-HP et la plateforme maladies rares, organiseront un<strong> week-end in\u00e9dit de conf\u00e9rences en ligne scientifiques et m\u00e9dicales enti\u00e8rement d\u00e9di\u00e9es aux maladies rares.<\/strong><\/li>\n<\/ul>\n<p>Le programme du week-end ainsi que les conditions d&rsquo;acc\u00e8s se trouvent ici: <a href=\"https:\/\/www.institutimagine.org\/fr\/27-et-28-fevrier-2021-un-weekend-dedie-aux-maladies-rares-1017\" target=\"_blank\" rel=\"noopener\">https:\/\/www.institutimagine.org\/fr\/27-et-28-fevrier-2021-un-weekend-dedie-aux-maladies-rares-1017<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Pour prendre connaissance de tous les \u00e9v\u00e8nements organis\u00e9s dans le monde entier, c&rsquo;est ici: <a href=\"https:\/\/www.rarediseaseday.org\/events\/world\" target=\"_blank\" rel=\"noopener\">https:\/\/www.rarediseaseday.org\/events\/world<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>*Sources: <a href=\"https:\/\/www.rarediseaseday.org\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.rarediseaseday.org\/<\/a><\/p>\n<p>Cr\u00e9dit photo: Adobe Stock<\/p>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; La journ\u00e9e internationale des maladie rares a \u00e9t\u00e9 mise en place en 2008 pour la premi\u00e8re fois, un 29 F\u00e9vrier. Cette date \u00e9tant rare, elle a dor\u00e9navant lieu le&hellip;<\/p>\n","protected":false},"author":38,"featured_media":13511,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[21],"tags":[],"class_list":["post-13510","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Journ\u00e9e Internationale des Maladies Rares [28 F\u00e9vrier 2021] - Vivre Plus Hollister<\/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.vivreplushollister.com\/stomie\/journee-internationale-des-maladies-rares-28-fevrier-2021\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Journ\u00e9e Internationale des Maladies Rares [28 F\u00e9vrier 2021] - Vivre Plus Hollister\" \/>\n<meta property=\"og:description\" content=\"&nbsp; La journ\u00e9e internationale des maladie rares a \u00e9t\u00e9 mise en place en 2008 pour la premi\u00e8re fois, un 29 F\u00e9vrier. 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