{"id":39945,"date":"2024-01-23T15:47:28","date_gmt":"2024-01-23T20:47:28","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/01\/23\/participez-a-la-celebration-mois-de-sensibilisation-aux-maladies-rares\/"},"modified":"2024-01-29T10:01:51","modified_gmt":"2024-01-29T15:01:51","slug":"participez-a-la-celebration-mois-de-sensibilisation-aux-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/fr\/2024\/01\/23\/participez-a-la-celebration-mois-de-sensibilisation-aux-maladies-rares\/","title":{"rendered":"Participez \u00e0 la c\u00e9l\u00e9bration : Mois de sensibilisation aux maladies rares"},"content":{"rendered":"<h3><strong><span class=\"notranslate\">Participez \u00e0 la c\u00e9l\u00e9bration : Mois de sensibilisation aux maladies rares<\/span><\/strong><\/h3>\n<p><span style=\"font-weight: 400;\">L&#8217;\u00e9quipe de <span class=\"notranslate\">Simons Searchlight<\/span> est ravie de s&#8217;associer \u00e0 notre communaut\u00e9 d\u00e9vou\u00e9e de participants, de familles, de soignants, de groupes de d\u00e9fense des patients, de chercheurs et de prestataires m\u00e9dicaux du monde entier pour c\u00e9l\u00e9brer la Journ\u00e9e des maladies rares en f\u00e9vrier.  <strong>Observ\u00e9e chaque ann\u00e9e le 28 f\u00e9vrier, ou le 29 les ann\u00e9es bissextiles, la Journ\u00e9e des maladies rares co\u00efncide avec le jour le plus rare de l&#8217;ann\u00e9e<\/strong>. En l&#8217;honneur de cette \u00e9tape, nous organisons pendant un mois une s\u00e9rie d&#8217;activit\u00e9s destin\u00e9es \u00e0 accro\u00eetre la visibilit\u00e9, la connaissance et le soutien des maladies g\u00e9n\u00e9tiques rares du d\u00e9veloppement neurologique.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Nos amis de la National Organization for Rare Disorders (NORD) d\u00e9crivent l&#8217;\u00e9v\u00e9nement annuel comme un &#8220;mouvement coordonn\u00e9 \u00e0 l&#8217;\u00e9chelle mondiale sur les maladies rares, \u0153uvrant pour l&#8217;\u00e9quit\u00e9 en mati\u00e8re d&#8217;opportunit\u00e9s sociales, de soins de sant\u00e9 et d&#8217;acc\u00e8s au diagnostic et aux th\u00e9rapies pour les personnes vivant avec une maladie rare&#8221;.  <\/span><a href=\"https:\/\/www.rarediseaseday.org\/what-is-rare-disease-day\/\"><span style=\"font-weight: 400;\">En savoir plus<\/span><\/a><\/p>\n<p><strong>D\u00e9couvrez les <a href=\"https:\/\/www.simonssearchlight.org\/fr\/2024\/02\/08\/mois-de-sensibilisation-aux-maladies-rares-serie-de-webinaires\/\" target=\"_blank\" rel=\"noopener\">webinaires<\/a> que nous avons pr\u00e9vus pour reconna\u00eetre cette initiative de sensibilisation mondiale tout au long du mois, tous con\u00e7us pour amplifier nos efforts collectifs.<\/strong><\/p>\n<h3><b>Un message de Wendy Chung, chercheuse principale de <span class=\"notranslate\">Simons Searchlight<\/span><\/b><\/h3>\n<p><span style=\"font-weight: 400;\">Wendy Chung, docteur en m\u00e9decine, est heureuse de c\u00e9l\u00e9brer le Mois de la sensibilisation aux maladies rares aux c\u00f4t\u00e9s de notre incroyable communaut\u00e9. Regardez la vid\u00e9o compl\u00e8te ci-dessous pour en savoir plus sur son engagement \u00e0 long terme en tant que chercheuse principale de <span class=\"notranslate\">Simons Searchlight<\/span>.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><iframe loading=\"lazy\" title=\"Lecteur vid\u00e9o YouTube\" src=\"https:\/\/www.youtube.com\/embed\/XwdAIAidUZc?si=_hhk6TYY7HICCgKG\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Simons Searchlight se joint \u00e0 notre communaut\u00e9 pour honorer cette initiative de sensibilisation mondiale.<\/p>\n","protected":false},"author":18,"featured_media":39949,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[196],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39945"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/comments?post=39945"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39945\/revisions"}],"predecessor-version":[{"id":39957,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/39945\/revisions\/39957"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media\/39949"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media?parent=39945"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/categories?post=39945"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/tags?post=39945"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}