{"id":8675,"date":"2019-12-20T16:12:01","date_gmt":"2019-12-20T15:12:01","guid":{"rendered":"https:\/\/www-old.kapcode.fr\/?p=8675"},"modified":"2021-10-27T22:55:53","modified_gmt":"2021-10-27T20:55:53","slug":"telethon-maladies-neuromusculaires","status":"publish","type":"post","link":"https:\/\/www.kapcode.fr\/en\/articles\/telethon-neuromuscular-disease\/","title":{"rendered":"Telethon - Neuromuscular diseases"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"8675\" class=\"elementor elementor-8675\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3fe92cf7 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3fe92cf7\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-6ecfbd89\" data-id=\"6ecfbd89\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-aaabf4b elementor-widget elementor-widget-video\" data-id=\"aaabf4b\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/2S_QR5g9npU&quot;,&quot;yt_privacy&quot;:&quot;yes&quot;,&quot;lazy_load&quot;:&quot;yes&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-59eb2ef7 elementor-widget elementor-widget-text-editor\" data-id=\"59eb2ef7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h2>Le T\u00e9l\u00e9thon, un \u00e9v\u00e8nement caritatif en faveur de la recherche sur les maladies rares<\/h2>\n<p>L\u2019<a href=\"https:\/\/www.afm-telethon.fr\/\" target=\"_blank\" rel=\"noopener\">AFM-T\u00e9l\u00e9thon<\/a> est une association de parents et de malades qui lutte contre des maladies g\u00e9n\u00e9tiques rares et lourdement invalidantes. Afin de soutenir des projets de recherche m\u00e9dicale sur ces maladies, l\u2019association se mobilise pour collecter des fonds notamment \u00e0 travers le T\u00e9l\u00e9thon. Le <a href=\"https:\/\/www.afm-telethon.fr\/telethon-0\" target=\"_blank\" rel=\"noopener\">T\u00e9l\u00e9thon<\/a> est un \u00e9v\u00e8nement caritatif qui se d\u00e9roule en France chaque premier week-end du mois de d\u00e9cembre. Au cours de cet \u00e9v\u00e8nement,&nbsp;un marathon t\u00e9l\u00e9visuel de 30 heures est diffus\u00e9 \u00e0 la t\u00e9l\u00e9vision fran\u00e7aise et plusieurs milliers d\u2019animations sont organis\u00e9es \u00e0 travers toute la France. Cette ann\u00e9e, le T\u00e9l\u00e9thon a permis de r\u00e9colter pr\u00e8s de 75 millions de promesses de dons. <a href=\"#_ftn1\" name=\"_ftnref1\">[1]<\/a> <a href=\"#_ftn2\" name=\"_ftnref2\">[2]<\/a><\/p>\n<h2>Une analyse des r\u00e9seaux sociaux sur les maladies neuromusculaires<\/h2>\n<p>A l\u2019occasion de cette \u00e9dition, nous avons mis \u00e0 contribution notre outil <a href=\"https:\/\/www.kapcode.fr\/medical\/\">Detec\u2019t<\/a> pour analyser ce qui se dit sur les r\u00e9seaux sociaux et les forums m\u00e9dicaux autour des maladies neuromusculaires concern\u00e9es par le T\u00e9l\u00e9thon <a href=\"#_ftn3\">[3]<\/a>. Au cours de cette analyse r\u00e9alis\u00e9e, environ 5 000 messages post\u00e9s par pr\u00e8s de 3 000 internautes ont \u00e9t\u00e9 \u00e9tudi\u00e9s. Il en ressort que l\u2019internaute moyen est une femme de 40 ans. Les discussions des internautes tournent le plus fr\u00e9quemment autour des t\u00e9moignages de parents d\u2019enfants malades, des d\u00e9tails des sympt\u00f4mes des maladies et du parcours de soin. Les termes m\u00e9dicaux qui reviennent le plus souvent sont la douleur, la fatigue et la grossesse.<\/p>\n<p>Pour en savoir plus sur les r\u00e9sultats de cette analyse, consultez notre infographie sur le T\u00e9l\u00e9thon et les maladies g\u00e9n\u00e9tiques rares.<a href=\"#_ftnref1\" name=\"_ftn1\"><\/a><a href=\"#_ftnref1\" name=\"_ftn1\"><\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d5c00b2 elementor-widget elementor-widget-image\" data-id=\"d5c00b2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf.jpg\" data-elementor-open-lightbox=\"yes\" data-elementor-lightbox-title=\"Detect_Infographie-maladiesrares-telethon_vf\" data-e-action-hash=\"#elementor-action%3Aaction%3Dlightbox%26settings%3DeyJpZCI6MTIzMDksInVybCI6Imh0dHBzOlwvXC93d3cua2FwY29kZS5mclwvd3AtY29udGVudFwvdXBsb2Fkc1wvMjAxOVwvMTJcL0RldGVjdF9JbmZvZ3JhcGhpZS1tYWxhZGllc3JhcmVzLXRlbGV0aG9uX3ZmLmpwZyJ9\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"801\" height=\"2052\" src=\"https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf.jpg\" class=\"attachment-full size-full wp-image-12309\" alt=\"Infographie - T\u00e9l\u00e9thon \u2013 Maladies neuromusculaires\" srcset=\"https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf.jpg 801w, https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf-117x300.jpg 117w, https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf-400x1024.jpg 400w, https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf-768x1967.jpg 768w, https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf-600x1536.jpg 600w, https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf-799x2048.jpg 799w, https:\/\/www.kapcode.fr\/wp-content\/uploads\/2019\/12\/Detect_Infographie-maladiesrares-telethon_vf-5x12.jpg 5w\" sizes=\"(max-width: 801px) 100vw, 801px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3d6efe89 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3d6efe89\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-434ad4c5\" data-id=\"434ad4c5\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3a83fa94 elementor-widget elementor-widget-heading\" data-id=\"3a83fa94\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-medium\">Sources<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-32ee9dd8 cst-post-sources elementor-widget elementor-widget-text-editor\" data-id=\"32ee9dd8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><a href=\"#_ftnref1\" name=\"_ftn1\"><\/a><span id=\"js-reference-string-0\" class=\"selectable\"><\/span><\/p><p><a href=\"#_ftnref1\" name=\"_ftn1\">[1]<\/a> <a href=\"https:\/\/www.afm-telethon.fr\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.afm-telethon.fr\/<\/a><\/p><p><a href=\"#_ftnref2\" name=\"_ftn2\">[2]<\/a> <a href=\"https:\/\/www.francetvinfo.fr\/societe\/telethon\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.francetvinfo.fr\/societe\/telethon\/<\/a><\/p><p><a href=\"#_ftnref3\">[3]<\/a> Liste des maladies : AMYOTROPHIE SPINALE &#8211; DYSTROPHIE MUSCULAIRE &#8211; GAMMA SARCOGLYCANOPATHIE &#8211; MALADIE DE BECKER &#8211; MALADIE DE CHARCOT &#8211; MALADIE DE POMPE &#8211; MALADIE DE STEINERT &#8211; MYASTHENIE &#8211; MYOPATHIE CONGENITALE &#8211; MYOPATHIE DE DUCHENNE &#8211; MYOPATHIE DES CEINTURES &#8211; MYOPATHIE FACIO SCAPULO HUMERALE &#8211; MYOPATHIE INFLAMMATOIRE &#8211; MYOPATHIE MITOCHONDRIALE &#8211; MYOPATHIE MYOTONIQUE PROXIMALE &#8211; MYOSITE &#8211; SYNDROME MYASTHENIQUE CONGENITAL<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>The Telethon took place on December 6 &amp; 7, 2019. Discover our infographic around the neuromuscular diseases concerned by the Telethon.<\/p>","protected":false},"author":4,"featured_media":12314,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[53],"tags":[95,51,21,18],"class_list":["post-8675","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-infographie","tag-analyse","tag-experience-patient","tag-reseaux-sociaux","tag-rwd"],"_links":{"self":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/posts\/8675","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/comments?post=8675"}],"version-history":[{"count":0,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/posts\/8675\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/media\/12314"}],"wp:attachment":[{"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/media?parent=8675"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/categories?post=8675"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.kapcode.fr\/en\/wp-json\/wp\/v2\/tags?post=8675"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}