{"id":3109,"date":"2023-12-14T10:07:14","date_gmt":"2023-12-14T09:07:14","guid":{"rendered":"https:\/\/afpca.fr\/site\/?p=3109"},"modified":"2023-12-18T17:45:57","modified_gmt":"2023-12-18T16:45:57","slug":"decembre-2023-marche-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/afpca.fr\/site\/decembre-2023-marche-des-maladies-rares\/","title":{"rendered":"D\u00e9cembre 2023 : marche des maladies rares"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"3109\" class=\"elementor elementor-3109\">\n\t\t\t\t<div class=\"elementor-element elementor-element-95bc509 e-flex e-con-boxed e-con e-parent\" data-id=\"95bc509\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-558ee97 elementor-widget elementor-widget-text-editor\" data-id=\"558ee97\" 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<hr \/><p><span style=\"color: #ff0000;\"><em><strong>Nous devons pr\u00e9ciser qu&#8217;\u00e0 ce jour nous n&#8217;avons jamais re\u00e7u des fonds de l&#8217;AFM t\u00e9l\u00e9thon<\/strong><\/em><\/span><\/p><p><strong><em>H\u00e9l\u00e8ne Berru\u00e9-Gaillard, Pr\u00e9sidente de l\u2019Alliance maladies rares a \u00e9crit :<\/em><\/strong><\/p><p><em>&#8220;Vous avez \u00e9t\u00e9 formidables !\u00a0<\/em><\/p><p><em>Malgr\u00e9 la pluie, nous \u00e9tions pr\u00e8s de 1000 r\u00e9unis samedi \u00e0 cette marche des maladies rares, organis\u00e9e dans le cadre du T\u00e9l\u00e9thon. Malades, familles, aidants, associations, soignants, partenaires &#8230; votre courage, vos sourires, votre \u00e9nergie pour rendre visible nos combats communs ont \u00e9t\u00e9 exemplaires.\u00a0<\/em><\/p><p><em>Du jardin du Luxembourg au Parvis des Droits de l&#8217;Homme, en cort\u00e8ge, nous avons march\u00e9 3 heures, port\u00e9 nos pancartes, chant\u00e9 et dans\u00e9 sous la pluie, unis et solidaires.\u00a0Nous \u00e9tions mobilis\u00e9s pour repr\u00e9senter les 3 millions de Fran\u00e7ais qui souffrent d&#8217;une maladie rare, sortir de notre isolement, faire conna\u00eetre nos 7000 maladies rares, appeler aux dons pour acc\u00e9l\u00e9rer la recherche pour des traitements. Bravo et merci d\u2019avoir fait de cette marche un grand succ\u00e8s !<\/em><\/p><p><em>Notre marche\u00a0et nos t\u00e9moignages ont b\u00e9n\u00e9fici\u00e9 d\u2019une belle visibilit\u00e9 sur France T\u00e9l\u00e9visions avec la programmation d\u2019interviews durant l\u2019\u00e9mission \u00abL\u2019apr\u00e8s-midi du T\u00e9l\u00e9thon\u00a0\u00bb et en soir\u00e9e lors de\u00a0\u00ab\u00a0La grande f\u00eate du T\u00e9l\u00e9thon\u00a0\u00bb.\u00a0<\/em><\/p><p><em>Une centaine de marcheurs ont rejoint samedi soir \u00ab\u00a0La grande f\u00eate du T\u00e9l\u00e9thon\u00a0\u00bb. A minuit, devant des milliers de t\u00e9l\u00e9spectateurs, nous \u00e9tions en direct sur France 2 pour rendre visible nos maladies inconnues, affirmer notre unit\u00e9 et notre refus de la fatalit\u00e9, notre combat ind\u00e9fectible pour acc\u00e9l\u00e9rer les diagnostics, la recherche de traitements pour toutes nos maladies rares, c\u00e9l\u00e9brer les premi\u00e8res\u00a0victoires\u00a0et enfin remercier les Fran\u00e7ais de leur g\u00e9n\u00e9rosit\u00e9.\u00a0<\/em><\/p><p><em>Au nom de tous les membres du Conseil national, merci \u00e0 tous les b\u00e9n\u00e9voles, aux \u00e9quipes de l\u2019Alliance maladies rares et de l\u2019AFM-T\u00e9l\u00e9thon qui se sont mobilis\u00e9s pour pr\u00e9parer et encadrer cette marche des maladies rares et accompagner notre venue sur le plateau du T\u00e9l\u00e9thon.<\/em><\/p><p><em>Unis pour vaincre. Faisons alliance pour les maladies rares.&#8221;<\/em><\/p><hr \/><p><strong><em>Caroline, membre du bureau de l&#8217;AFPCA, <\/em><\/strong><em>a particip\u00e9 \u00e0 la marche sous la pluie et s&#8217;est rendue \u00e0 l&#8217;\u00e9mission du t\u00e9l\u00e9thon jusqu&#8217;\u00e0 tard dans la nuit.\u00a0 un grand MERCI pour son implication dans l&#8217;association.\u00a0<\/em><\/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\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-d010825 e-flex e-con-boxed e-con e-parent\" data-id=\"d010825\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-8be0b55 e-con-full e-flex e-con e-child\" data-id=\"8be0b55\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-ef86503 elementor-widget elementor-widget-image\" data-id=\"ef86503\" 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100vw, 577px\" \/>\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<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Nous devons pr\u00e9ciser qu&#8217;\u00e0 ce jour nous n&#8217;avons jamais re\u00e7u des fonds de l&#8217;AFM t\u00e9l\u00e9thon H\u00e9l\u00e8ne Berru\u00e9-Gaillard, Pr\u00e9sidente de l\u2019Alliance maladies rares a \u00e9crit : &#8220;Vous avez \u00e9t\u00e9 formidables !\u00a0 Malgr\u00e9 la pluie, nous \u00e9tions pr\u00e8s de 1000 r\u00e9unis samedi \u00e0 cette marche des maladies rares, organis\u00e9e dans le cadre du T\u00e9l\u00e9thon. Malades, familles, aidants, [&hellip;]<\/p>\n","protected":false},"author":10,"featured_media":3151,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-3109","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-classe","post-with-thumbnail","post-with-thumbnail-large"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>D\u00e9cembre 2023 : marche des maladies rares - Association Francophone Contre La Polychondrite Chronique Atrophiante<\/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:\/\/afpca.fr\/site\/decembre-2023-marche-des-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00e9cembre 2023 : marche des maladies rares - Association Francophone Contre La Polychondrite Chronique Atrophiante\" \/>\n<meta property=\"og:description\" content=\"Nous devons pr\u00e9ciser qu&#8217;\u00e0 ce jour nous n&#8217;avons jamais re\u00e7u des fonds de l&#8217;AFM t\u00e9l\u00e9thon H\u00e9l\u00e8ne Berru\u00e9-Gaillard, Pr\u00e9sidente de l\u2019Alliance maladies rares a \u00e9crit : &#8220;Vous avez \u00e9t\u00e9 formidables !\u00a0 Malgr\u00e9 la pluie, nous \u00e9tions pr\u00e8s de 1000 r\u00e9unis samedi \u00e0 cette marche des maladies rares, organis\u00e9e dans le cadre du T\u00e9l\u00e9thon. 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