{"id":23296,"date":"2026-01-05T14:50:44","date_gmt":"2026-01-05T19:50:44","guid":{"rendered":"https:\/\/arsacs.com\/?p=23296"},"modified":"2026-03-16T18:18:43","modified_gmt":"2026-03-16T22:18:43","slug":"congres-mondial-sur-les-medicaments-orphelins-a-amsterdam","status":"publish","type":"post","link":"https:\/\/arsacs.com\/fr\/world-orphan-drug-congress-in-amsterdam\/","title":{"rendered":"Congr\u00e8s mondial sur les m\u00e9dicaments orphelins 2025"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En novembre dernier, la Fondation Ataxie Charlevoix-Saguenay a \u00e9t\u00e9 fi\u00e8rement repr\u00e9sent\u00e9e au Congr\u00e8s mondial sur les m\u00e9dicaments orphelins, \u00e0 Amsterdam. \u00c0 titre de conf\u00e9renciers, les Drs Francesca Maltecca, Daniele De Ritis et Bart van de Warrentburg, ainsi que Sonia Gobeil, ont partag\u00e9 leur expertise et leur engagement envers la recherche sur l\u2019ARSACS. Leur participation a contribu\u00e9 \u00e0 faire conna\u00eetre les travaux en cours et \u00e0 nourrir l\u2019espoir des personnes et des familles touch\u00e9es par cette maladie rare.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La Fondation Ataxie Charlevoix-Saguenay \u00e9tait \u00e9galement pr\u00e9sente avec un kiosque d\u2019exposition, offrant une belle occasion d\u2019\u00e9changer avec les participants, de cr\u00e9er de nouveaux liens et de faire conna\u00eetre sa mission \u00e0 l\u2019\u00e9chelle internationale.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"23321\" src=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/9ed177da-7b2f-4ba6-a266-ee03ec3a3475-1024x768.jpeg\" alt=\"\" class=\"wp-image-23321\" srcset=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/9ed177da-7b2f-4ba6-a266-ee03ec3a3475-980x735.jpeg 980w, https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/9ed177da-7b2f-4ba6-a266-ee03ec3a3475-480x360.jpeg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) 1024px, 100vw\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"23317\" src=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/60fe76ad-94ba-4418-aef6-27946c4d5cb7-1024x768.jpeg\" alt=\"\" class=\"wp-image-23317\" srcset=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/60fe76ad-94ba-4418-aef6-27946c4d5cb7-980x735.jpeg 980w, https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/60fe76ad-94ba-4418-aef6-27946c4d5cb7-480x360.jpeg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) 1024px, 100vw\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"23313\" src=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/9955e919-e523-4f0d-ad72-41785c4481d0-1024x768.jpeg\" alt=\"\" class=\"wp-image-23313\" srcset=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/9955e919-e523-4f0d-ad72-41785c4481d0-980x735.jpeg 980w, https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/9955e919-e523-4f0d-ad72-41785c4481d0-480x360.jpeg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) 1024px, 100vw\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"23309\" src=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/b00513a0-f872-457a-9509-90b134b91f79-1024x768.jpeg\" alt=\"\" class=\"wp-image-23309\" srcset=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/b00513a0-f872-457a-9509-90b134b91f79-980x735.jpeg 980w, https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/b00513a0-f872-457a-9509-90b134b91f79-480x360.jpeg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) 1024px, 100vw\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"640\" height=\"480\" data-id=\"23301\" src=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/thumbnail_IMG_6321-rotated.jpg\" alt=\"\" class=\"wp-image-23301\" srcset=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/thumbnail_IMG_6321-rotated.jpg 640w, https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/thumbnail_IMG_6321-480x360.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 640px, 100vw\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"640\" height=\"480\" data-id=\"23297\" src=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/thumbnail_IMG_6322-rotated.jpg\" alt=\"\" class=\"wp-image-23297\" srcset=\"https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/thumbnail_IMG_6322-rotated.jpg 640w, https:\/\/arsacs.com\/wp-content\/uploads\/2026\/01\/thumbnail_IMG_6322-480x360.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 640px, 100vw\" \/><\/figure>\n<\/figure>","protected":false},"excerpt":{"rendered":"<p>Last November, Charlevoix\u2013Saguenay Ataxia Foundation was brilliantly represented at the World Orphan Drug Congress in Amsterdam. As speakers, Drs. Francesca Maltecca, Daniele De Ritis, Bart van de Warrentburg, and Sonia Gobeil shared their expertise and unwavering commitment, helping to spotlight ongoing research and bring hope to individuals and families affected by this rare disease. The [&#8230;]<\/p>\n","protected":false},"author":3,"featured_media":23305,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10,6],"tags":[],"class_list":["post-23296","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-conferences","category-news"],"_links":{"self":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/posts\/23296","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=23296"}],"version-history":[{"count":4,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/posts\/23296\/revisions"}],"predecessor-version":[{"id":25165,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/posts\/23296\/revisions\/25165"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/media\/23305"}],"wp:attachment":[{"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/media?parent=23296"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/categories?post=23296"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/arsacs.com\/fr\/wp-json\/wp\/v2\/tags?post=23296"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}