{"id":11549,"date":"2022-11-06T17:19:23","date_gmt":"2022-11-06T16:19:23","guid":{"rendered":"https:\/\/berrygoodnews.fr\/?p=11549"},"modified":"2022-11-06T17:19:27","modified_gmt":"2022-11-06T16:19:27","slug":"telethon-a-vierzon-2022","status":"publish","type":"post","link":"https:\/\/berrygoodnews.fr\/index.php\/2022\/11\/06\/telethon-a-vierzon-2022\/","title":{"rendered":"T\u00e9l\u00e9thon \u00e0 Vierzon 2022"},"content":{"rendered":"\n<figure class=\"wp-block-embed-youtube wp-block-embed is-type-video is-provider-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" width=\"850\" height=\"478\" src=\"https:\/\/www.youtube.com\/embed\/a_ueIshdR8E?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen title=\"T\u00e9l\u00e9thon Vierzon 2022\"><\/iframe>\n<\/div><\/figure>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"alignleft\"><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" width=\"100\" height=\"88\" data-attachment-id=\"11551\" data-permalink=\"https:\/\/berrygoodnews.fr\/index.php\/2022\/11\/06\/telethon-a-vierzon-2022\/images-1\/\" data-orig-file=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/images-1.jpg?fit=100%2C88&amp;ssl=1\" data-orig-size=\"100,88\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"images (1)\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/images-1.jpg?fit=100%2C88&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/images-1.jpg?fit=100%2C88&amp;ssl=1\" src=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/images-1.jpg?resize=100%2C88&#038;ssl=1\" alt=\"\" class=\"wp-image-11551\"\/><\/figure><\/div>\n\n\n\n<p>De longue date, L\u2019AFM-T\u00e9l\u00e9thon agit pour d\u00e9fendre les droits des malades, faire progresser la citoyennet\u00e9 des personnes en situation de handicap et faire reconna\u00eetre les maladies rares. En tant qu\u2019acteur de la recherche et de l\u2019innovation, elle d\u00e9fend une politique nationale volontariste et ambitieuse. &nbsp;<br>&nbsp;<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>Depuis plus de 60 ans qu\u2019elle se bat contre la fatalit\u00e9 et pour l\u2019acc\u00e8s aux droits et aux traitements, l\u2019AFM-T\u00e9l\u00e9thon a \u00e9t\u00e9 \u00e0 l\u2019origine de nombreuses avanc\u00e9es dans le domaine de la recherche m\u00e9dicale et de l\u2019accompagnement \u00e0 l\u2019autonomie en sant\u00e9 des malades.<\/strong>&nbsp;N\u00e9anmoins, 20 ans apr\u00e8s l\u2019arriv\u00e9e des lois sur les droits des malades et la mise en place des plans nationaux, et alors que des th\u00e9rapies innovantes sont en train de voir le jour pour les maladies rares,\u202fde nombreux progr\u00e8s restent \u00e0 faire pour changer r\u00e9ellement la vie des personnes concern\u00e9es.&nbsp;<\/p>\n\n\n\n<p>A lire aussi :&nbsp;<a href=\"https:\/\/www.afm-telethon.fr\/fr\/l-association\/nos-actions-pour-aider-les-malades\/agir-pour-les-maladies-rares\">Agir pour les maladies rares<\/a><br>&nbsp;<\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter is-resized\"><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" data-attachment-id=\"11552\" data-permalink=\"https:\/\/berrygoodnews.fr\/index.php\/2022\/11\/06\/telethon-a-vierzon-2022\/attachment\/2\/\" data-orig-file=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/2.jpg?fit=478%2C489&amp;ssl=1\" data-orig-size=\"478,489\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"2\" data-image-description=\"\" data-image-caption=\"\" data-medium-file=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/2.jpg?fit=293%2C300&amp;ssl=1\" data-large-file=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/2.jpg?fit=478%2C489&amp;ssl=1\" src=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/2.jpg?resize=355%2C363&#038;ssl=1\" alt=\"\" class=\"wp-image-11552\" width=\"355\" height=\"363\" srcset=\"https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/2.jpg?w=478&amp;ssl=1 478w, https:\/\/i0.wp.com\/berrygoodnews.fr\/wp-content\/uploads\/2022\/11\/2.jpg?resize=293%2C300&amp;ssl=1 293w\" sizes=\"auto, (max-width: 355px) 100vw, 355px\" \/><\/figure><\/div>\n\n\n\n<h2 class=\"wp-block-heading\">D\u00e9velopper la recherche pour innover<\/h2>\n\n\n\n<p><strong>La recherche m\u00e9dicale, une priorit\u00e9 nationale.&nbsp;<\/strong><\/p>\n\n\n\n<p>Constat : si les chercheurs fran\u00e7ais d\u00e9montrent r\u00e9guli\u00e8rement leur excellence, notamment dans le domaine des bioth\u00e9rapies,&nbsp;<strong>la recherche fran\u00e7aise souffre de sous-investissements r\u00e9currents et d\u2019une organisation peu efficiente<\/strong>. \u00c0 ce titre, il est urgent que des investissements soient r\u00e9alis\u00e9s pour gagner en efficacit\u00e9 et combler le retard en sant\u00e9 pris par rapport \u00e0 nos voisins europ\u00e9ens, notamment l\u2019Allemagne et l\u2019Italie. Par ailleurs, l\u2019organisation en silos et en millefeuilles de la recherche publique fran\u00e7aise qui se d\u00e9cline en autant d\u2019entit\u00e9s de valorisation, constitue un v\u00e9ritable frein au d\u00e9veloppement et \u00e0 la valorisation de nos innovations sur notre territoire. &nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>L\u2019AFM-T\u00e9l\u00e9thon milite pour : &nbsp;<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\"><li>simplifier l\u2019organisation de la recherche fran\u00e7aise et de la valorisation ; &nbsp;<\/li><li>accro\u00eetre les investissements dans la recherche m\u00e9dicale pour rattraper les pays les plus performants ; &nbsp;<\/li><li>mettre en place une v\u00e9ritable strat\u00e9gie d\u2019innovation, conjuguant une recherche \u00ab \u00ab libre \u00bb non programm\u00e9e et une part significative de financement sur objectifs, avec exigence accrue de r\u00e9sultats.&nbsp;<\/li><\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Les th\u00e9rapies issues de la connaissance du g\u00e8ne : une chance pour la France<\/h2>\n\n\n\n<p>Constat : la r\u00e9volution de la th\u00e9rapie g\u00e9nique est lanc\u00e9e pour les maladies rares comme les maladies fr\u00e9quentes avec la multiplication ces derni\u00e8res ann\u00e9es des mises sur le march\u00e9 et des essais. Alors que&nbsp;<strong>les preuves de concept sont tr\u00e8s souvent issues de la recherche fran\u00e7aise<\/strong>, publique ou priv\u00e9e \u00e0 but non lucratif,&nbsp;<strong>ce sont d\u2019autres pays qui r\u00e9alisent aujourd\u2019hui des investissements massifs pour r\u00e9soudre les d\u00e9fis scientifiques et techniques n\u00e9cessaires \u00e0 la production de ces traitements innovants \u00e0 grande \u00e9chelle et \u00e0 un prix raisonnable.<\/strong>&nbsp;\u00c0 la cl\u00e9 : l\u2019implantation de sites industriels, des milliers d\u2019emplois directs hautement qualifi\u00e9s, une garantie d\u2019approvisionnement pour ces nouveaux traitements. La faiblesse de la France dans le d\u00e9veloppement de nos inventions est doublement p\u00e9nalisante : nous ne b\u00e9n\u00e9ficions que d\u2019une infime partie de la valeur n\u00e9e de nos recherches et les m\u00e9dicaments sont mis sur le march\u00e9 national (lorsqu\u2019ils le sont) \u00e0 des prix tr\u00e8s \u00e9lev\u00e9s.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>L\u2019AFM-T\u00e9l\u00e9thon milite pour : &nbsp;<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\"><li>Cr\u00e9er des fonds d\u2019investissement suffisamment capitalis\u00e9s et capables d\u2019intervenir \u00e0 tous les stades de d\u00e9veloppement des candidats m\u00e9dicaments. Ces fonds devront s\u2019appuyer sur une connaissance forte du domaine, en s\u2019entourant d\u2019experts scientifiques, m\u00e9dicaux et financiers, et favoriser esprit d\u2019ouverture et culture d\u2019innovation ;&nbsp;<\/li><li>Cr\u00e9er un centre de R&amp;D transdisciplinaire d\u00e9di\u00e9 \u00e0 l\u2019innovation dans le domaine des bioproc\u00e9d\u00e9s pour les th\u00e9rapies issues de la connaissance du g\u00e8ne, afin d\u2019am\u00e9liorer les rendements de production d\u2019un facteur 100.&nbsp;<\/li><\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Simplifier le parcours de vie des personnes malades<\/h2>\n\n\n\n<p>Constat : les personnes et les familles concern\u00e9es par des maladies graves, d\u00e9j\u00e0 confront\u00e9es \u00e0 des d\u00e9cisions complexes, font face \u00e0&nbsp;<strong>une incompr\u00e9hensible lourdeur administrative et \u00e0 des d\u00e9lais souvent incompatibles avec leurs besoins et l\u2019\u00e9volution de leur maladie<\/strong>. Dans un environnement o\u00f9 les mesures de simplification prises ces derni\u00e8res ann\u00e9es n\u2019ont eu qu\u2019un impact tr\u00e8s faible sur les parcours, l\u2019accompagnement \u00e0 l\u2019autonomie en sant\u00e9 visant \u00e0 soutenir et renforcer l\u2019autod\u00e9termination des personnes est indispensable.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>L\u2019AFM-T\u00e9l\u00e9thon milite pour : &nbsp;<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\"><li>g\u00e9n\u00e9raliser le principe du d\u00e9claratif \u00e0 la place de la justification syst\u00e9matique ;&nbsp;<\/li><li>coordonner les financements publics et mettre \u00e0 disposition de la personne malade un interlocuteur unique ;&nbsp;<\/li><li>garantir le droit \u00e0 l\u2019accompagnement \u00e0 l\u2019autonomie en sant\u00e9 pour les personnes concern\u00e9es par des maladies graves, et reconna\u00eetre les initiatives, comme celle de l\u2019AFM-T\u00e9l\u00e9thon, qui y concourent.&nbsp;<\/li><\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Garantir enfin les droits et la citoyennet\u00e9 des personnes en situation de handicap<\/h2>\n\n\n\n<p>Constat : la loi de 2005 a \u00e9t\u00e9 \u00e0 l\u2019origine d\u2019avanc\u00e9es majeures pour les droits des personnes en situation de handicap, mais le combat doit se poursuivre pour la concr\u00e9tisation de certains de ces droits.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>L\u2019AFM-T\u00e9l\u00e9thon milite pour : &nbsp;<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\"><li>acc\u00e9l\u00e9rer la mise en accessibilit\u00e9, pour la circulation des personnes et leur logement et plus largement la r\u00e9alisation de leur projet de vie ;&nbsp;<\/li><li>garantir l\u2019acc\u00e8s \u00e0 des aides humaines form\u00e9es et adapt\u00e9es aux besoins et au projet de vie \u00e0 domicile de chaque malade ;&nbsp;<\/li><li>assurer le droit au financement int\u00e9gral et sans reste \u00e0 charge des moyens de compensation des incapacit\u00e9s, comme les fauteuils roulants ou aides techniques adapt\u00e9s aux besoins ;&nbsp;<\/li><li>garantir le droit \u00e0 des ressources financi\u00e8res permettant de ne pas survivre mais de vivre dignement.&nbsp;<\/li><\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Relancer une strat\u00e9gie nationale maladies rares<\/h2>\n\n\n\n<p>95% des maladies rares sont sans traitement. Il est n\u00e9cessaire de relancer une strat\u00e9gie nationale maladies rares et d&rsquo;innover pour les maladies ultra-rares.&nbsp;<\/p>\n\n\n\n<p>Constat : l\u2019h\u00f4pital public est un maillon incontournable de la prise en charge des millions de Fran\u00e7ais concern\u00e9s par des maladies rares. Consultations annul\u00e9es, d\u00e9lais allong\u00e9s, fermeture de lits :&nbsp;<strong>les moyens financiers du S\u00e9gur de la sant\u00e9 ne suffisent pas pour garantir un acc\u00e8s aux soins et aux&nbsp;expertises maladies rares<\/strong>. Les fili\u00e8res nationales maladies rares constituent une organisation r\u00e9cente exemplaire de sant\u00e9 publique, mais faute de moyens, elles sont actuellement en forte difficult\u00e9.<\/p>\n\n\n\n<p>Au sein des maladies rares, les maladies ultra-rares sont majoritaires en nombre (plusieurs milliers) mais ne concernent chacune que quelques dizaines de patients dans notre pays. Alors que le foisonnement d\u2019avanc\u00e9es scientifiques, notamment la th\u00e9rapie g\u00e9nique, est source d\u2019immenses espoirs,&nbsp;<strong>les ultra-rares n\u2019offrent pas de mod\u00e8le \u00e9conomique, et les m\u00e9canismes habituels de mise&nbsp;sur le march\u00e9 ne sont pas adapt\u00e9s<\/strong>.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>L\u2019AFM-T\u00e9l\u00e9thon milite pour : &nbsp;<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\"><li>doter l\u2019h\u00f4pital public et les parcours de soins des personnes concern\u00e9es par les maladies rares des moyens n\u00e9cessaires ;&nbsp;<\/li><li>lancer un nouveau Plan national maladies rares pluriannuel et disposer d\u2019une strat\u00e9gie nationale claire et transversale b\u00e9n\u00e9ficiant des financements indispensables \u00e0 son d\u00e9ploiement ;&nbsp;<\/li><li>&nbsp;mettre en place un d\u00e9pistage n\u00e9onatal en ad\u00e9quation avec les attentes des familles et comparable \u00e0 celui de nos voisins europ\u00e9ens ;&nbsp;<\/li><li>&nbsp;cr\u00e9er une organisation\/initiative associant acteurs publics, priv\u00e9s non lucratifs et priv\u00e9s lucratifs pour financer le d\u00e9veloppement et la production de traitements contre les maladies ultra rares.&nbsp;<\/li><\/ul>\n\n\n\n<p><a href=\"https:\/\/www.afm-telethon.fr\/fr\/l-association\/qui-sommes-nous\/nos-combats\">SOURCE DE L&rsquo;ARTICLE<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>De longue date, L\u2019AFM-T\u00e9l\u00e9thon agit pour d\u00e9fendre les droits des malades, faire progresser la citoyennet\u00e9 des personnes en situation de handicap et faire reconna\u00eetre les maladies rares. En tant qu\u2019acteur de la recherche et de l\u2019innovation, elle d\u00e9fend une politique nationale volontariste et ambitieuse. &nbsp;&nbsp; Depuis plus de 60 ans qu\u2019elle se bat contre la &hellip;<\/p>\n","protected":false},"author":2,"featured_media":11552,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[14,43],"tags":[629,1650,1228,27],"post_format":[],"flags":[],"class_list":["post-11549","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-vierzon-et-ses-environs","category-vous","tag-gersende","tag-telethon-2022","tag-the-voice-kids","tag-vierzon"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>T\u00e9l\u00e9thon \u00e0 Vierzon 2022 - Berry Good News<\/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:\/\/berrygoodnews.fr\/index.php\/2022\/11\/06\/telethon-a-vierzon-2022\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"T\u00e9l\u00e9thon \u00e0 Vierzon 2022 - Berry Good News\" \/>\n<meta property=\"og:description\" content=\"De longue date, L\u2019AFM-T\u00e9l\u00e9thon agit pour d\u00e9fendre les droits des malades, faire progresser la citoyennet\u00e9 des personnes en situation de handicap et faire reconna\u00eetre les maladies rares. 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