{"id":991,"date":"2023-12-13T11:34:39","date_gmt":"2023-12-13T11:34:39","guid":{"rendered":"https:\/\/teamdoc.fr\/blog\/?p=991"},"modified":"2023-12-13T15:59:20","modified_gmt":"2023-12-13T15:59:20","slug":"le-telethon-36-ans-dune-epopee-caritative-pour-la-guerison-des-maladies-genetiques-rares","status":"publish","type":"post","link":"https:\/\/teamdoc.fr\/blog\/le-telethon-36-ans-dune-epopee-caritative-pour-la-guerison-des-maladies-genetiques-rares\/","title":{"rendered":"Le T\u00e9l\u00e9thon : 36 ans d&rsquo;une \u00e9pop\u00e9e caritative pour la gu\u00e9rison des maladies g\u00e9n\u00e9tiques rares"},"content":{"rendered":"\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Le T\u00e9l\u00e9thon est un \u00e9v\u00e9nement caritatif majeur annuel \u00e0 travers le monde. Initi\u00e9 pour la premi\u00e8re fois en France en 1987, il vise \u00e0 collecter des fonds pour la recherche m\u00e9dicale et le traitement des maladies g\u00e9n\u00e9tiques rares, en particulier les maladies neuromusculaires.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>La gen\u00e8se du T\u00e9l\u00e9thon fran\u00e7ais.<\/strong><\/h2>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Le T\u00e9l\u00e9thon fran\u00e7ais trouve ses origines dans la volont\u00e9 de deux p\u00e8res d\u00e9termin\u00e9s \u00e0 changer le destin de leurs enfants atteints de myopathie de Duchenne. Bernard Barataud, pr\u00e9sident de l&rsquo;AFM, et Pierre Birambeau, directeur du d\u00e9veloppement, ont imagin\u00e9 un \u00e9v\u00e9nement t\u00e9l\u00e9vis\u00e9 capable de mobiliser l&rsquo;opinion publique et de financer la recherche contre ces maladies neuromusculaires. <\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"819\" src=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/261-1024x819.png\" alt=\"\" class=\"wp-image-993\" style=\"width:702px\" srcset=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/261-1024x819.png 1024w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/261-300x240.png 300w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/261-768x614.png 768w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/261-1536x1229.png 1536w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/261.png 2000w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Le 4 d\u00e9cembre 1987, le premier T\u00e9l\u00e9thon fran\u00e7ais prend son envol, orchestr\u00e9 avec maestria par Michel Drucker, Claude S\u00e9rillon, G\u00e9rard Holtz et Jacques Chancel, en direct des studios de Radio France. En l&rsquo;espace de 28 heures, l&rsquo;\u00e9mission d\u00e9passe toutes les attentes en r\u00e9coltant la somme exceptionnelle de 175 millions de francs (\u00e9quivalant \u00e0 29,7 millions d&rsquo;euros), soit trois fois l&rsquo;objectif initial. Le compteur, initialement con\u00e7u pour afficher huit chiffres, est d\u00e9pass\u00e9, symbolisant ainsi le d\u00e9but d&rsquo;une aventure exceptionnelle marqu\u00e9e par la solidarit\u00e9 nationale.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Qu&rsquo;est-ce que la myopathie de Duchenne ?<\/strong><\/h2>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>La myopathie de Duchenne, \u00e9galement appel\u00e9e dystrophie musculaire de Duchenne (DMD), est une maladie g\u00e9n\u00e9tique rare et progressive qui affecte principalement les muscles. Elle doit son nom au m\u00e9decin fran\u00e7ais Guillaume Duchenne, qui l&rsquo;a d\u00e9crite pour la premi\u00e8re fois en 1858. La DMD est l&rsquo;une des formes les plus graves de dystrophie musculaire.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"819\" src=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/260-1024x819.png\" alt=\"\" class=\"wp-image-994\" style=\"width:702px;height:auto\" srcset=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/260-1024x819.png 1024w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/260-300x240.png 300w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/260-768x614.png 768w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/260-1536x1229.png 1536w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/260.png 2000w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Chaque ann\u00e9e, entre 150 et 200 nouveau-n\u00e9s masculins en France sont touch\u00e9s par cette maladie. Environ 2 500 personnes en France sont actuellement affect\u00e9es par cette condition.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p><a href=\"https:\/\/www.inserm.fr\/dossier\/myopathie-duchenne\/#:~:text=La%20myopathie%20de%20Duchenne%2C%20ou\">https:\/\/www.inserm.fr\/dossier\/myopathieduchenne\/#:~:text=La%20myopathie%20de%20Duchenne%2C%20ou<\/a><\/p>\n<\/blockquote>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Les chiffres cl\u00e9s du T\u00e9l\u00e9thon.<\/strong><\/h2>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>En 2023 :&nbsp;<\/p>\n\n\n\n<ul class=\"has-medium-font-size wp-block-list\">\n<li>215 000 b\u00e9n\u00e9voles et 50 000 associations mobilis\u00e9s ;<\/li>\n\n\n\n<li>13 000 communes engag\u00e9es ;<\/li>\n\n\n\n<li>30 heures d&rsquo;\u00e9mission sur France T\u00e9l\u00e9visions ;<\/li>\n\n\n\n<li>90 partenaires nationaux impliqu\u00e9s ;<\/li>\n\n\n\n<li>Un dispositif digital sur les r\u00e9seaux sociaux avec le T\u00e9l\u00e9thon Gaming, le T\u00e9l\u00e9thon Challenge et une \u00e9mission en direct sur YouTube ;<\/li>\n\n\n\n<li>80 671 222 \u20ac collect\u00e9s.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"819\" src=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/258-1024x819.png\" alt=\"\" class=\"wp-image-995\" style=\"width:702px\" srcset=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/258-1024x819.png 1024w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/258-300x240.png 300w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/258-768x614.png 768w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/258-1536x1229.png 1536w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/258.png 2000w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>R\u00e9partition des fonds :\ufeff<\/p>\n\n\n\n<ul class=\"has-medium-font-size wp-block-list\">\n<li>D\u00e9dier 37,6 millions d\u2019euros \u00e0 l\u2019aide aux malades (Consultations pluridisciplinaires, \u00e9tablissements de soins, services r\u00e9gionaux, etc.<\/li>\n\n\n\n<li>Allouer 56,2 millions d\u2019euros \u00e0 la mission \u00ab\u00a0Gu\u00e9rir\u00a0\u00bb de l\u2019AFM (+ 1,9 M\u20ac sous forme d&rsquo;avances et investissements dans la recherche ;<\/li>\n\n\n\n<li>Financer 41 essais cliniques pour 32 maladies diff\u00e9rentes.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p><a href=\"https:\/\/www.geo.fr\/histoire\/telethon-2023-histoire-chiffres-et-polemiques-bernard-barataud-recherche...\">https:\/\/www.geo.fr\/histoire\/telethon-2023-histoire-chiffres-et-polemiques-bernard-barataud-recherche&#8230;<\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/actu.fr\/societe\/telethon-2023-dates-ambassadeurs-parrain-dons-8-choses-a-savoir-sur-la-36e-edition_60335885.html\">https:\/\/actu.fr\/societe\/telethon-2023-dates-ambassadeurs-parrain-dons-8-choses-a-savoir-sur-la-36e-edition_60335885.html<\/a><\/p>\n<\/blockquote>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Pour qui s&rsquo;engage l&rsquo;AFM-T\u00e9l\u00e9thon ?<\/strong><\/h2>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>L&rsquo;AFM-T\u00e9l\u00e9thon, est une organisation regroupant des personnes atteintes de maladies g\u00e9n\u00e9tiques rares ainsi que des parents engag\u00e9s dans la lutte contre les maladies neuromusculaires, vise un seul but : la gu\u00e9rison.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"819\" src=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/259-1024x819.png\" alt=\"\" class=\"wp-image-996\" style=\"width:702px\" srcset=\"https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/259-1024x819.png 1024w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/259-300x240.png 300w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/259-768x614.png 768w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/259-1536x1229.png 1536w, https:\/\/teamdoc.fr\/blog\/wp-content\/uploads\/2023\/12\/259.png 2000w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Parmi les pathologies combattues par cette association se trouvent l&rsquo;amyotrophie spinale proximale li\u00e9e \u00e0 SMN1, la dystrophie musculaire de Duchenne, la maladie de Charcot-Marie-Tooth, les myopathies cong\u00e9nitales, les myosites (myopathies inflammatoires), les canalopathies musculaires, les dystrophies musculaires cong\u00e9nitales, la maladie de Steinert, la myopathie mitochondriale, la dystrophie musculaire de Becker, la glycog\u00e9nose musculaire, la myasth\u00e9nie auto-immune, la myopathie facio-scapulo-hum\u00e9rale, les syndromes myasth\u00e9niques cong\u00e9nitaux et la myopathie des ceintures. Chacune de ces conditions repr\u00e9sente un d\u00e9fi unique, mais l&rsquo;AFM-T\u00e9l\u00e9thon demeure r\u00e9solument engag\u00e9e dans sa qu\u00eate.<\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p><a href=\"https:\/\/www.lanouvellerepublique.fr\/tours\/telethon-en-indre-et-loire-toutes-les-animations-prevues-les-2-3-et-4-decembre-2022\">https:\/\/www.lanouvellerepublique.fr\/tours\/telethon-en-indre-et-loire-toutes-les-animations-prevues-les-2-3-et-4-decembre-2022<\/a><\/p>\n<\/blockquote>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-social-links is-content-justification-center is-layout-flex wp-container-core-social-links-is-layout-1 wp-block-social-links-is-layout-flex\"><li class=\"wp-social-link wp-social-link-linkedin  wp-block-social-link\"><a 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Initi\u00e9 pour la premi\u00e8re fois en France en 1987, il vise \u00e0 collecter des fonds pour la recherche m\u00e9dicale et le traitement des maladies g\u00e9n\u00e9tiques rares, en particulier les maladies neuromusculaires. La gen\u00e8se du T\u00e9l\u00e9thon fran\u00e7ais. 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