{"id":147,"date":"2025-02-25T10:49:00","date_gmt":"2025-02-25T09:49:00","guid":{"rendered":"https:\/\/strateg-it.fr\/?p=147"},"modified":"2025-03-05T10:50:10","modified_gmt":"2025-03-05T09:50:10","slug":"journee-internationale-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/strateg-it.fr\/index.php\/2025\/02\/25\/journee-internationale-des-maladies-rares\/","title":{"rendered":"Journ\u00e9e Internationale des Maladies Rares"},"content":{"rendered":"<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"600\" height=\"300\" src=\"http:\/\/strateg-it.fr\/wp-content\/uploads\/2025\/03\/RDD-2025_banniere-home-600x300-1.png\" alt=\"\" class=\"wp-image-142\" srcset=\"https:\/\/strateg-it.fr\/wp-content\/uploads\/2025\/03\/RDD-2025_banniere-home-600x300-1.png 600w, https:\/\/strateg-it.fr\/wp-content\/uploads\/2025\/03\/RDD-2025_banniere-home-600x300-1-300x150.png 300w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/><\/figure>\n<\/div>\n\n\n<p>Aujourd\u2019hui, c\u2019est la&nbsp;<strong>Journ\u00e9e Internationale des Maladies Rares<\/strong>. Cette journ\u00e9e a pour objectif de sensibiliser les citoyens et les d\u00e9cideurs aux maladies rares et \u00e0 leur impact sur la vie quotidienne des personnes qui en sont atteintes.<\/p>\n\n\n\n<p>Au sein de l\u2019Union Europ\u00e9enne, une maladie est consid\u00e9r\u00e9e comme rare lorsqu\u2019elle affecte moins d\u2019une personne sur 2 000. Pour la grande majorit\u00e9 des cas, on parle \u00e9galement de maladie orpheline, car les personnes concern\u00e9es ne b\u00e9n\u00e9ficient d\u2019aucun traitement.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Les maladies rares en quelques chiffres<\/strong><\/li>\n<\/ul>\n\n\n\n<p>Aujourd\u2019hui dans le monde, plus de&nbsp;<strong>300 millions de personnes<\/strong>&nbsp;vivent avec une maladie rare, soit<strong>&nbsp;5% de la population mondiale.&nbsp;Ce sont pr\u00e8s de 30 millions qui sont concern\u00e9es en Europe et 3 millions<\/strong>&nbsp;<strong>en France<\/strong>. On r\u00e9pertorie aujourd\u2019hui plus de&nbsp;<strong>7000 maladies rares<\/strong>&nbsp;dont&nbsp;<strong>72 % sont d\u2019origine g\u00e9n\u00e9tique.<\/strong>&nbsp;La majorit\u00e9 de ces pathologies g\u00e9n\u00e9tiques se manifestent d\u00e8s l\u2019enfance.<\/p>\n\n\n\n<p>Cette journ\u00e9e est l\u2019occasion de refaire un focus sur les&nbsp;<strong>maladies neuromusculaires<\/strong>&nbsp;qui entrent dans le champ des maladies rares et de souligner les avanc\u00e9es de la recherche, le d\u00e9veloppement des essais cliniques et les th\u00e9rapies innovantes qui ont pu voir le jour ces derni\u00e8res ann\u00e9es.<\/p>\n\n\n\n<figure class=\"wp-block-table\"><table class=\"has-fixed-layout\"><tbody><tr><td><strong>L\u2019Institut de Myologie<\/strong>&nbsp;a \u00e9t\u00e9 cr\u00e9\u00e9 il y a bient\u00f4t 30 ans par l\u2019AFM-T\u00e9l\u00e9thon en collaboration avec des partenaires publiques, l\u2019AP-HP, l\u2019INSERM, Sorbonne Universit\u00e9 et le CEA. Il rassemble aujourd\u2019hui&nbsp;<strong>pr\u00e8s de 300 experts<\/strong>, chercheurs, enseignants, m\u00e9decins,&nbsp;<strong>au service de la myologie, la science et de la m\u00e9decine du Muscle<\/strong>.C\u2019est un&nbsp;<strong>centre d\u2019expertise international de r\u00e9f\u00e9rence sur le muscle et ses pathologies<\/strong>&nbsp;qui consacre l\u2019ensemble de ses activit\u00e9s \u00e0 la recherche fondamentale, appliqu\u00e9e et clinique, \u00e0 l\u2019enseignement, au d\u00e9veloppement d\u2019essais cliniques, \u00e0 l\u2019\u00e9valuation, au diagnostic, au soin et au suivi des patients neuromusculaires.<\/td><\/tr><\/tbody><\/table><\/figure>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Focus sur les maladies neuromusculaires<\/strong><\/li>\n<\/ul>\n\n\n\n<p>Les maladies neuromusculaires font partie des maladies rares et on d\u00e9nombre&nbsp;<strong>plus de 400 maladies neuromusculaires diff\u00e9rentes<\/strong>&nbsp;tant par l\u2019importance et la gravit\u00e9 de l\u2019atteinte musculaire et de ses cons\u00e9quences sur l\u2019organisme (orthop\u00e9diques, respiratoires, cardiaques, digestives\u2026) que par leur causes (la majorit\u00e9 est d\u2019origine g\u00e9n\u00e9tique, certaines sont auto-immunes et inflammatoires\u2026).<\/p>\n\n\n\n<p>Les maladies neuromusculaires sont dues \u00e0 des atteintes de l\u2019unit\u00e9 motrice, structure physiologique constitu\u00e9e par le muscle, la jonction nerf\/muscle et le neurone moteur (qui relie le syst\u00e8me nerveux central au muscle). Dans les cas des maladies d\u2019origine g\u00e9n\u00e9tique, l\u2019anomalie g\u00e9n\u00e9tique emp\u00eache la fabrication d\u2019un constituant ou d\u2019une enzyme indispensable au bon fonctionnement de la cellule musculaire (dystrophies musculaires, myopathies cong\u00e9nitales, myopathies m\u00e9taboliques,&nbsp;canalopathies musculaires\u2026), de la jonction neuromusculaire (syndromes myasth\u00e9niques cong\u00e9nitaux) ou encore de la cellule nerveuse motrice (amyotrophies spinales, maladie de Charcot-Marie-Tooth\u2026).<\/p>\n\n\n\n<p>D\u2019autres maladies neuromusculaires sont dues \u00e0 un&nbsp;dysfonctionnement du syst\u00e8me de d\u00e9fense&nbsp;de l\u2019organisme (syst\u00e8me immunitaire). Dans la myasth\u00e9nie auto-immune, le syst\u00e8me immunitaire neutralise certains constituants de la jonction neuromusculaire : l\u2019ordre de contraction qui chemine le long des motoneurones a du mal \u00e0 \u00eatre transmis au muscle. Dans les myosites, la r\u00e9ponse immunitaire anormale entraine une r\u00e9action inflammatoire au niveau des muscles.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Les avanc\u00e9es de la recherche<\/strong><\/li>\n<\/ul>\n\n\n\n<p>La&nbsp;recherche dans les maladies neuromusculaires&nbsp;s\u2019est beaucoup d\u00e9velopp\u00e9e ces trente derni\u00e8res ann\u00e9es, en particulier gr\u00e2ce \u00e0 l\u2019impulsion et au&nbsp;soutien de l\u2019AFM-T\u00e9l\u00e9thon. La d\u00e9couverte des g\u00e8nes impliqu\u00e9s dans les formes g\u00e9n\u00e9tiques de ces maladies et une meilleure compr\u00e9hension des m\u00e9canismes en cause ont permis d\u2019explorer des pistes th\u00e9rapeutiques innovantes dont certaines sont \u00e0 l\u2019essai chez l\u2019homme.<\/p>\n\n\n\n<p>Les experts de l\u2019Institut de Myologie travaillent au quotidien sur plus d\u2019une vingtaine de maladies neuromusculaires&nbsp;: l\u2019amyotrophie spinale (SMA), les cardiomyopathies, les myosites, les myopathies (Becker, Duchenne, Emery-Dreifuss, des ceintures\u2026), les laminopathies, la maladie de Charcot-Marie-Tooth, la maladie de pompe, les myasth\u00e9nies, la scl\u00e9rose lat\u00e9rale amyotrophique (SLA)\u2026<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>L<\/strong><strong>e nouveau Plan National Maladies Rares (PNMR 4)<\/strong><\/li>\n<\/ul>\n\n\n\n<p>Un&nbsp;nouveau&nbsp;Plan National Maladies Rares (PNMR 4) a \u00e9t\u00e9 pr\u00e9sent\u00e9 par le Gouvernement cette semaine, mardi 25 f\u00e9vrier. Ce quatri\u00e8me volet tant attendu par les acteurs de la Fili\u00e8re Maladies Rares&nbsp;est avant tout un plan de continuit\u00e9&nbsp;mais qui n\u2019apporte pas de ruptures importantes.&nbsp;<strong>Parmi les 75 actions retenues, la plupart visent \u00e0 am\u00e9liorer ou consolider les dispositifs d\u00e9j\u00e0 mis en \u0153uvre par les plans pr\u00e9c\u00e9dents.&nbsp;<\/strong>Ces mesures, dont certaines sont tr\u00e8s techniques, sont positives et n\u00e9cessaires, m\u00eame si pour un grand nombre d\u2019entre elles il sera n\u00e9cessaire de d\u00e9finir un chef de file, des objectifs mesurables, et des budgets. Au-del\u00e0 de cette n\u00e9cessaire continuit\u00e9, plusieurs enjeux cruciaux restent insuffisamment trait\u00e9s : l\u2019acc\u00e8s au diagnostic, l\u2019accompagnement des parcours de sant\u00e9 et le d\u00e9veloppement des th\u00e9rapies innovantes.&nbsp;<a href=\"https:\/\/www.afm-telethon.fr\/fr\/actualites\/4e-plan-maladies-rares\" target=\"_blank\" rel=\"noreferrer noopener\">Lire la suite<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Aujourd\u2019hui, c\u2019est la&nbsp;Journ\u00e9e Internationale des Maladies Rares. Cette journ\u00e9e a pour objectif de sensibiliser les citoyens et les d\u00e9cideurs aux maladies rares et \u00e0 leur impact sur la vie quotidienne des personnes qui en sont atteintes. Au sein de l\u2019Union Europ\u00e9enne, une maladie est consid\u00e9r\u00e9e comme rare lorsqu\u2019elle affecte moins d\u2019une personne sur 2 000. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ocean_post_layout":"","ocean_both_sidebars_style":"","ocean_both_sidebars_content_width":0,"ocean_both_sidebars_sidebars_width":0,"ocean_sidebar":"","ocean_second_sidebar":"","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":"","ocean_custom_header_template":"","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":"","ocean_menu_typo_font_family":"","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":"","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":[10],"tags":[],"class_list":["post-147","post","type-post","status-publish","format-standard","hentry","category-actualite","entry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Journ\u00e9e Internationale des Maladies Rares - Institut de Myologie<\/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:\/\/strateg-it.fr\/index.php\/2025\/02\/25\/journee-internationale-des-maladies-rares\/\" \/>\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 - Institut de Myologie\" \/>\n<meta property=\"og:description\" content=\"Aujourd\u2019hui, c\u2019est la&nbsp;Journ\u00e9e Internationale des Maladies Rares. Cette journ\u00e9e a pour objectif de sensibiliser les citoyens et les d\u00e9cideurs aux maladies rares et \u00e0 leur impact sur la vie quotidienne des personnes qui en sont atteintes. Au sein de l\u2019Union Europ\u00e9enne, une maladie est consid\u00e9r\u00e9e comme rare lorsqu\u2019elle affecte moins d\u2019une personne sur 2 000. 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