{"id":14161,"date":"2026-09-21T11:05:39","date_gmt":"2026-09-21T09:05:39","guid":{"rendered":"https:\/\/www.afaf.asso.fr\/?p=14161"},"modified":"2026-09-21T11:05:43","modified_gmt":"2026-09-21T09:05:43","slug":"informations-sur-le-dossier-skyclarys-omaveloxolone","status":"publish","type":"post","link":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/","title":{"rendered":"Informations sur le dossier Skyclarys\u00ae (omaveloxolone)"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Chers amis,<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Comme indiqu\u00e9 dans notre communication du 1er septembre concernant le dossier Skyclarys\u00ae (omaveloxolone), nous souhaitons vous apporter un point d&#8217;information sur la situation et les prochaines \u00e9tapes.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u00c9tat d\u2019avancement du dossier<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u00c0 la suite de l\u2019\u00e9valuation rendue le 8 juillet 2026 par la Commission de la Transparence de la Haute Autorit\u00e9 de Sant\u00e9 (HAS), des n\u00e9gociations tarifaires sont actuellement en cours entre le Comit\u00e9 \u00e9conomique des produits de sant\u00e9 (CEPS) et le laboratoire Biogen.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Acc\u00e8s au traitement et dispositif d\u2019Acc\u00e8s Pr\u00e9coce<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Dans le contexte actuel, les n\u00e9gociations entre le CEPS et le laboratoire pourraient s\u2019av\u00e9rer particuli\u00e8rement complexes. Dans cette situation, le laboratoire pourrait d\u00e9cider de ne pas demander le renouvellement du dispositif d\u2019Acc\u00e8s Pr\u00e9coce pour Skyclarys\u00ae.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Si tel \u00e9tait le cas, le dispositif d\u2019Acc\u00e8s Pr\u00e9coce prendrait fin en janvier 2027. Toutefois, il est important de souligner que :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Les patients d\u00e9j\u00e0 inclus dans le dispositif, ainsi que ceux qui le seront avant fin janvier 2027, continueront \u00e0 b\u00e9n\u00e9ficier du traitement selon les modalit\u00e9s actuelles jusqu\u2019\u00e0 fin janvier 2028. Le laboratoire a en effet l\u2019obligation l\u00e9gale d\u2019assurer la fourniture du m\u00e9dicament pendant un an apr\u00e8s la fin de l\u2019Acc\u00e8s Pr\u00e9coce.<\/li>\n\n\n\n<li>Les patients d\u00e9j\u00e0 inclus dans le dispositif n\u2019ont donc aucune d\u00e9marche particuli\u00e8re \u00e0 effectuer pour continuer \u00e0 recevoir leur traitement jusqu\u2019en janvier 2028.<\/li>\n\n\n\n<li>En revanche, si l\u2019Acc\u00e8s Pr\u00e9coce n\u2019\u00e9tait pas renouvel\u00e9, aucun nouveau patient ne pourrait int\u00e9grer ce dispositif apr\u00e8s fin janvier 2027.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Nous savons que cette situation peut susciter des interrogations et des inqui\u00e9tudes. \u00c0 ce stade, les personnes b\u00e9n\u00e9ficiant d\u00e9j\u00e0 de l\u2019Acc\u00e8s Pr\u00e9coce peuvent \u00eatre rassur\u00e9es quant \u00e0 la continuit\u00e9 de leur traitement dans les conditions pr\u00e9vues par la r\u00e9glementation.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Conditions de remboursement<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pour rappel, et d\u2019apr\u00e8s <a href=\"http:\/\/sante.gouv.fr\/\" target=\"_blank\" rel=\"noreferrer noopener\">sante.gouv.fr<\/a>,\u00a0l\u2019acc\u00e8s au remboursement d\u2019un m\u00e9dicament repose sur plusieurs \u00e9tapes :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Le CEPS fixe le prix du m\u00e9dicament.<\/li>\n\n\n\n<li>L\u2019Union nationale des caisses d\u2019assurance maladie (UNCAM) d\u00e9termine le taux de remboursement, notamment en fonction du niveau de service m\u00e9dical rendu (SMR) et de la gravit\u00e9 de la maladie concern\u00e9e.<\/li>\n\n\n\n<li>Les minist\u00e8res charg\u00e9s de la Sant\u00e9 et de la S\u00e9curit\u00e9 sociale prennent ensuite la d\u00e9cision finale d\u2019inscription au remboursement, publi\u00e9e au Journal officiel.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u00c0 ce jour, le dernier avis de la HAS attribue \u00e0 Skyclarys\u00ae un Service M\u00e9dical Rendu (SMR) qualifi\u00e9 de faible (niveau 5). Dans le cadre du d\u00e9cret du 21 ao\u00fbt 2026, cela pourrait conduire \u00e0 un niveau de remboursement de l\u2019ordre de 5 % (<a href=\"https:\/\/www.legifrance.gouv.fr\/jorf\/id\/JORFTEXT000054733601\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.legifrance.gouv.fr\/jorf\/id\/JORFTEXT000054733601<\/a>).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Agir ensemble<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Face \u00e0 ces enjeux majeurs pour les personnes concern\u00e9es par l\u2019ataxie de Friedreich, l\u2019AFAF reste pleinement mobilis\u00e9e.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nous pr\u00e9parons une action de sensibilisation sous la forme d\u2019une lettre ouverte ou d\u2019une p\u00e9tition destin\u00e9e \u00e0 la fois aux pouvoirs publics et au laboratoire dans le but qu\u2019ils trouvent une solution p\u00e9renne et acceptable pour les malades.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Apr\u00e8s concertation avec nos partenaires (Fili\u00e8re BRAIN-TEAM, Alliance Maladies Rares, Centre de R\u00e9f\u00e9rence), nous solliciterons votre soutien pour relayer nos messages, t\u00e9moigner de votre exp\u00e9rience et renforcer nos d\u00e9marches.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">D\u00e8s \u00e0 pr\u00e9sent, nous invitons toutes les personnes qui le peuvent \u00e0 se manifester si elles disposent de contacts ou de possibilit\u00e9s de relais aupr\u00e8s :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>des m\u00e9dias et de la presse ;<\/li>\n\n\n\n<li>des responsables politiques (d\u00e9put\u00e9s, s\u00e9nateurs, \u00e9lus locaux, etc.) ;<\/li>\n\n\n\n<li>ou de toute autre organisation susceptible de soutenir cette mobilisation.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Chaque t\u00e9moignage, chaque relais et chaque soutien peuvent contribuer \u00e0 faire entendre la voix des personnes vivant avec l\u2019ataxie de Friedreich et de leurs familles.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Pour en savoir plus<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Vous pouvez consulter notre communiqu\u00e9 du 1er septembre d\u00e9taillant l\u2019avis rendu par la HAS le 8 juillet 2026 :<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.afaf.asso.fr\/2026\/09\/01\/avis-sur-le-medicament-skyclarys-50mg-omaveloxolone-gelule-dans-lataxie-de-friedreich-chez-ladulte-et-ladolescent-a-partir-de-16-ans-par-la-commission-de-la-transparence-ct-de-la-ha\/\" target=\"_blank\" rel=\"noreferrer noopener\">Avis sur le m\u00e9dicament SKYCLARYS 50mg (omav\u00e9loxolone), g\u00e9lule dans l\u2019Ataxie de Friedreich chez l&#8217;adulte et l&#8217;adolescent \u00e0 partir de 16 ans, par la Commission de la Transparence (CT) de la HAS du 8 juillet 2026 &#8211; Association Fran\u00e7aise Ataxie de Friedreich<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Chers amis, Comme indiqu\u00e9 dans notre communication du 1er septembre concernant le dossier Skyclarys\u00ae (omaveloxolone), nous souhaitons vous apporter un point d&#8217;information sur la situation et les prochaines \u00e9tapes. \u00c9tat d\u2019avancement du dossier \u00c0 la suite de l\u2019\u00e9valuation rendue le 8 juillet 2026 par la Commission de la Transparence de la Haute Autorit\u00e9 de Sant\u00e9 [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":9137,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"ocean_front_end_style_editor":"no","ocean_post_layout":"","ocean_both_sidebars_style":"","ocean_both_sidebars_content_width":0,"ocean_both_sidebars_sidebars_width":0,"ocean_sidebar":"0","ocean_second_sidebar":"0","ocean_disable_margins":"enable","ocean_add_body_class":"","ocean_shortcode_before_top_bar":"","ocean_shortcode_after_top_bar":"","ocean_shortcode_before_header":"","ocean_shortcode_after_header":"","ocean_has_shortcode":"","ocean_shortcode_after_title":"","ocean_shortcode_before_footer_widgets":"","ocean_shortcode_after_footer_widgets":"","ocean_shortcode_before_footer_bottom":"","ocean_shortcode_after_footer_bottom":"","ocean_display_top_bar":"default","ocean_display_header":"default","ocean_header_style":"","ocean_center_header_left_menu":"0","ocean_custom_header_template":"0","ocean_custom_logo":0,"ocean_custom_retina_logo":0,"ocean_custom_logo_max_width":0,"ocean_custom_logo_tablet_max_width":0,"ocean_custom_logo_mobile_max_width":0,"ocean_custom_logo_max_height":0,"ocean_custom_logo_tablet_max_height":0,"ocean_custom_logo_mobile_max_height":0,"ocean_header_custom_menu":"0","ocean_menu_typo_font_family":"0","ocean_menu_typo_font_subset":"","ocean_menu_typo_font_size":0,"ocean_menu_typo_font_size_tablet":0,"ocean_menu_typo_font_size_mobile":0,"ocean_menu_typo_font_size_unit":"px","ocean_menu_typo_font_weight":"","ocean_menu_typo_font_weight_tablet":"","ocean_menu_typo_font_weight_mobile":"","ocean_menu_typo_transform":"","ocean_menu_typo_transform_tablet":"","ocean_menu_typo_transform_mobile":"","ocean_menu_typo_line_height":0,"ocean_menu_typo_line_height_tablet":0,"ocean_menu_typo_line_height_mobile":0,"ocean_menu_typo_line_height_unit":"","ocean_menu_typo_spacing":0,"ocean_menu_typo_spacing_tablet":0,"ocean_menu_typo_spacing_mobile":0,"ocean_menu_typo_spacing_unit":"","ocean_menu_link_color":"","ocean_menu_link_color_hover":"","ocean_menu_link_color_active":"","ocean_menu_link_background":"","ocean_menu_link_hover_background":"","ocean_menu_link_active_background":"","ocean_menu_social_links_bg":"","ocean_menu_social_hover_links_bg":"","ocean_menu_social_links_color":"","ocean_menu_social_hover_links_color":"","ocean_disable_title":"default","ocean_disable_heading":"default","ocean_post_title":"","ocean_post_subheading":"","ocean_post_title_style":"","ocean_post_title_background_color":"","ocean_post_title_background":0,"ocean_post_title_bg_image_position":"","ocean_post_title_bg_image_attachment":"","ocean_post_title_bg_image_repeat":"","ocean_post_title_bg_image_size":"","ocean_post_title_height":0,"ocean_post_title_bg_overlay":0.5,"ocean_post_title_bg_overlay_color":"","ocean_disable_breadcrumbs":"default","ocean_breadcrumbs_color":"","ocean_breadcrumbs_separator_color":"","ocean_breadcrumbs_links_color":"","ocean_breadcrumbs_links_hover_color":"","ocean_display_footer_widgets":"default","ocean_display_footer_bottom":"default","ocean_custom_footer_template":"0","ocean_post_oembed":"","ocean_post_self_hosted_media":"","ocean_post_video_embed":"","ocean_link_format":"","ocean_link_format_target":"self","ocean_quote_format":"","ocean_quote_format_link":"post","ocean_gallery_link_images":"on","ocean_gallery_id":[],"footnotes":""},"categories":[43],"tags":[],"class_list":["post-14161","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-informations_recherche","entry","has-media","owp-thumbs-layout-horizontal","owp-btn-normal","owp-tabs-layout-section","has-no-thumbnails"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Informations sur le dossier Skyclarys\u00ae (omaveloxolone) - Association Fran\u00e7aise Ataxie de Friedreich<\/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.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Informations sur le dossier Skyclarys\u00ae (omaveloxolone) - Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"og:description\" content=\"Chers amis, Comme indiqu\u00e9 dans notre communication du 1er septembre concernant le dossier Skyclarys\u00ae (omaveloxolone), nous souhaitons vous apporter un point d&#8217;information sur la situation et les prochaines \u00e9tapes. \u00c9tat d\u2019avancement du dossier \u00c0 la suite de l\u2019\u00e9valuation rendue le 8 juillet 2026 par la Commission de la Transparence de la Haute Autorit\u00e9 de Sant\u00e9 [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/\" \/>\n<meta property=\"og:site_name\" content=\"Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"article:published_time\" content=\"2026-09-21T09:05:39+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-09-21T09:05:43+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/07\/Skyclarys.png\" \/>\n\t<meta property=\"og:image:width\" content=\"349\" \/>\n\t<meta property=\"og:image:height\" content=\"144\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Caroline Gaboriau\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline Gaboriau\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/\"},\"author\":{\"name\":\"Caroline Gaboriau\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#\\\/schema\\\/person\\\/7366aa03c1779ab28140e42231ed7b28\"},\"headline\":\"Informations sur le dossier Skyclarys\u00ae (omaveloxolone)\",\"datePublished\":\"2026-09-21T09:05:39+00:00\",\"dateModified\":\"2026-09-21T09:05:43+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/\"},\"wordCount\":711,\"publisher\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2023\\\/07\\\/Skyclarys.png\",\"articleSection\":[\"Informations sur la recherche\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/\",\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/\",\"name\":\"Informations sur le dossier Skyclarys\u00ae (omaveloxolone) - Association Fran\u00e7aise Ataxie de Friedreich\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2023\\\/07\\\/Skyclarys.png\",\"datePublished\":\"2026-09-21T09:05:39+00:00\",\"dateModified\":\"2026-09-21T09:05:43+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/#primaryimage\",\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2023\\\/07\\\/Skyclarys.png\",\"contentUrl\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2023\\\/07\\\/Skyclarys.png\",\"width\":349,\"height\":144},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2026\\\/09\\\/21\\\/informations-sur-le-dossier-skyclarys-omaveloxolone\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\\\/\\\/www.afaf.asso.fr\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Informations sur le dossier Skyclarys\u00ae (omaveloxolone)\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#website\",\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/\",\"name\":\"Association Fran\u00e7aise Ataxie de Friedreich\",\"description\":\"Association Fran\u00e7aise de l&#039;Ataxie de Friedreich\",\"publisher\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/www.afaf.asso.fr\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#organization\",\"name\":\"Association Fran\u00e7aise Ataxie de Friedreich\",\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2022\\\/06\\\/Logo-vert.png\",\"contentUrl\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2022\\\/06\\\/Logo-vert.png\",\"width\":1181,\"height\":709,\"caption\":\"Association Fran\u00e7aise Ataxie de Friedreich\"},\"image\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#\\\/schema\\\/logo\\\/image\\\/\"}},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#\\\/schema\\\/person\\\/7366aa03c1779ab28140e42231ed7b28\",\"name\":\"Caroline Gaboriau\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/8dbf8226706683015a2752bfbf4ecf0bea399e33452121cb9c1f4640fbea214f?s=96&d=mm&r=g\",\"url\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/8dbf8226706683015a2752bfbf4ecf0bea399e33452121cb9c1f4640fbea214f?s=96&d=mm&r=g\",\"contentUrl\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/8dbf8226706683015a2752bfbf4ecf0bea399e33452121cb9c1f4640fbea214f?s=96&d=mm&r=g\",\"caption\":\"Caroline Gaboriau\"},\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/author\\\/caroline_gaboriau\\\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Informations sur le dossier Skyclarys\u00ae (omaveloxolone) - Association Fran\u00e7aise Ataxie de Friedreich","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/","og_locale":"fr_FR","og_type":"article","og_title":"Informations sur le dossier Skyclarys\u00ae (omaveloxolone) - Association Fran\u00e7aise Ataxie de Friedreich","og_description":"Chers amis, Comme indiqu\u00e9 dans notre communication du 1er septembre concernant le dossier Skyclarys\u00ae (omaveloxolone), nous souhaitons vous apporter un point d&#8217;information sur la situation et les prochaines \u00e9tapes. \u00c9tat d\u2019avancement du dossier \u00c0 la suite de l\u2019\u00e9valuation rendue le 8 juillet 2026 par la Commission de la Transparence de la Haute Autorit\u00e9 de Sant\u00e9 [&hellip;]","og_url":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/","og_site_name":"Association Fran\u00e7aise Ataxie de Friedreich","article_published_time":"2026-09-21T09:05:39+00:00","article_modified_time":"2026-09-21T09:05:43+00:00","og_image":[{"width":349,"height":144,"url":"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/07\/Skyclarys.png","type":"image\/png"}],"author":"Caroline Gaboriau","twitter_card":"summary_large_image","twitter_misc":{"\u00c9crit par":"Caroline Gaboriau","Dur\u00e9e de lecture estim\u00e9e":"4 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/#article","isPartOf":{"@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/"},"author":{"name":"Caroline Gaboriau","@id":"https:\/\/www.afaf.asso.fr\/#\/schema\/person\/7366aa03c1779ab28140e42231ed7b28"},"headline":"Informations sur le dossier Skyclarys\u00ae (omaveloxolone)","datePublished":"2026-09-21T09:05:39+00:00","dateModified":"2026-09-21T09:05:43+00:00","mainEntityOfPage":{"@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/"},"wordCount":711,"publisher":{"@id":"https:\/\/www.afaf.asso.fr\/#organization"},"image":{"@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/#primaryimage"},"thumbnailUrl":"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/07\/Skyclarys.png","articleSection":["Informations sur la recherche"],"inLanguage":"fr-FR"},{"@type":"WebPage","@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/","url":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/","name":"Informations sur le dossier Skyclarys\u00ae (omaveloxolone) - Association Fran\u00e7aise Ataxie de Friedreich","isPartOf":{"@id":"https:\/\/www.afaf.asso.fr\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/#primaryimage"},"image":{"@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/#primaryimage"},"thumbnailUrl":"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/07\/Skyclarys.png","datePublished":"2026-09-21T09:05:39+00:00","dateModified":"2026-09-21T09:05:43+00:00","breadcrumb":{"@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/#primaryimage","url":"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/07\/Skyclarys.png","contentUrl":"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/07\/Skyclarys.png","width":349,"height":144},{"@type":"BreadcrumbList","@id":"https:\/\/www.afaf.asso.fr\/2026\/09\/21\/informations-sur-le-dossier-skyclarys-omaveloxolone\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Accueil","item":"https:\/\/www.afaf.asso.fr\/"},{"@type":"ListItem","position":2,"name":"Informations sur le dossier Skyclarys\u00ae (omaveloxolone)"}]},{"@type":"WebSite","@id":"https:\/\/www.afaf.asso.fr\/#website","url":"https:\/\/www.afaf.asso.fr\/","name":"Association Fran\u00e7aise Ataxie de Friedreich","description":"Association Fran\u00e7aise de l&#039;Ataxie de Friedreich","publisher":{"@id":"https:\/\/www.afaf.asso.fr\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.afaf.asso.fr\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/www.afaf.asso.fr\/#organization","name":"Association Fran\u00e7aise Ataxie de Friedreich","url":"https:\/\/www.afaf.asso.fr\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.afaf.asso.fr\/#\/schema\/logo\/image\/","url":"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/Logo-vert.png","contentUrl":"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/Logo-vert.png","width":1181,"height":709,"caption":"Association Fran\u00e7aise Ataxie de Friedreich"},"image":{"@id":"https:\/\/www.afaf.asso.fr\/#\/schema\/logo\/image\/"}},{"@type":"Person","@id":"https:\/\/www.afaf.asso.fr\/#\/schema\/person\/7366aa03c1779ab28140e42231ed7b28","name":"Caroline Gaboriau","image":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/secure.gravatar.com\/avatar\/8dbf8226706683015a2752bfbf4ecf0bea399e33452121cb9c1f4640fbea214f?s=96&d=mm&r=g","url":"https:\/\/secure.gravatar.com\/avatar\/8dbf8226706683015a2752bfbf4ecf0bea399e33452121cb9c1f4640fbea214f?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/8dbf8226706683015a2752bfbf4ecf0bea399e33452121cb9c1f4640fbea214f?s=96&d=mm&r=g","caption":"Caroline Gaboriau"},"url":"https:\/\/www.afaf.asso.fr\/author\/caroline_gaboriau\/"}]}},"_links":{"self":[{"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/posts\/14161","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/users\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/comments?post=14161"}],"version-history":[{"count":2,"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/posts\/14161\/revisions"}],"predecessor-version":[{"id":14163,"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/posts\/14161\/revisions\/14163"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/media\/9137"}],"wp:attachment":[{"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/media?parent=14161"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/categories?post=14161"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.afaf.asso.fr\/api-afaf\/wp\/v2\/tags?post=14161"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}