{"id":22261,"date":"2025-05-05T10:06:16","date_gmt":"2025-05-05T14:06:16","guid":{"rendered":"https:\/\/arsacs.com\/?p=22261"},"modified":"2026-04-10T12:01:20","modified_gmt":"2026-04-10T16:01:20","slug":"la-fondation-lors-du-congres-mondial-sur-les-medicaments-orphelins-de-2025","status":"publish","type":"post","link":"https:\/\/arsacs.com\/fr\/the-foundation-at-the-2025-world-orphan-drug-congress\/","title":{"rendered":"La Fondation au Congr\u00e8s mondial sur les m\u00e9dicaments orphelins de 2025"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Du 22 au 24 avril, la Fondation Ataxie Charlevoix-Saguenay a particip\u00e9 au Congr\u00e8s mondial sur les maladies orphelines (WODC), un \u00e9v\u00e9nement majeur r\u00e9unissant des acteurs de premier plan du domaine des maladies rares et des m\u00e9dicaments orphelins.<\/p>\r\n\r\n\r\n\r\n<p class=\"wp-block-paragraph\">Nous avons eu le privil\u00e8ge de :<\/p>\r\n\r\n\r\n\r\n<p class=\"wp-block-paragraph\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/static.xx.fbcdn.net\/images\/emoji.php\/v9\/t33\/1\/16\/2705.png\" alt=\"\u2705\" width=\"16\" height=\"16\" \/> Pr\u00e9sentation des avanc\u00e9es r\u00e9alis\u00e9es dans le d\u00e9veloppement d'une th\u00e9rapie g\u00e9nique contre l'ARSACS, avec Alexandre Par\u00e9 (doctorant \u00e0 l'universit\u00e9 McGill).<\/p>\r\n\r\n\r\n\r\n<p class=\"wp-block-paragraph\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/static.xx.fbcdn.net\/images\/emoji.php\/v9\/t33\/1\/16\/2705.png\" alt=\"\u2705\" width=\"16\" height=\"16\" \/> Animation d'une table ronde stimulante sur les d\u00e9fis concrets auxquels sont confront\u00e9s les patients, en pr\u00e9sence de Sonia Gobeil, Betsy Trainor et du Dr Jeremy Schmahmann (Harvard Medical School).<\/p>\r\n\r\n\r\n\r\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"924\" height=\"924\" class=\"wp-image-22262\" src=\"https:\/\/arsacs.com\/wp-content\/uploads\/2025\/05\/WODC-2025-1-1024x1024.jpg\" alt=\"\" srcset=\"https:\/\/arsacs.com\/wp-content\/uploads\/2025\/05\/WODC-2025-1-980x980.jpg 924w, https:\/\/arsacs.com\/wp-content\/uploads\/2025\/05\/WODC-2025-1-480x480.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 924px) 924px, 100vw\" \/><\/figure>","protected":false},"excerpt":{"rendered":"<p>From April 22 to 24, the Ataxia Charlevoix-Saguenay Foundation was present at the World Orphan Disease Congress (WODC), a major event gathering global leaders in the field of rare diseases and orphan drugs. We had the privilege of: Presenting the progress in the development of a gene therapy for ARSACS, with Alexandre Par\u00e9 (PhD candidate [&#8230;]<\/p>\n","protected":false},"author":3,"featured_media":25904,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[],"class_list":["post-22261","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/posts\/22261","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/comments?post=22261"}],"version-history":[{"count":4,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/posts\/22261\/revisions"}],"predecessor-version":[{"id":25905,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/posts\/22261\/revisions\/25905"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/media\/25904"}],"wp:attachment":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/media?parent=22261"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/categories?post=22261"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/tags?post=22261"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}