{"id":12607,"date":"2025-10-13T08:00:00","date_gmt":"2025-10-13T06:00:00","guid":{"rendered":"https:\/\/www.afaf.asso.fr\/?p=12607"},"modified":"2025-10-06T15:25:42","modified_gmt":"2025-10-06T13:25:42","slug":"barometre-europeen-rare","status":"publish","type":"post","link":"https:\/\/www.afaf.asso.fr\/2025\/10\/13\/barometre-europeen-rare\/","title":{"rendered":"Barom\u00e8tre europ\u00e9en &#8220;Rare&#8221;"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Vous, ou un membre de votre famille, vivez avec l&#8217;ataxie de Friedreich.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.eurordis.org\/\" target=\"_blank\" rel=\"noreferrer noopener\"><u>EURORDIS-Rare Diseases Europe<\/u><\/a> \u00a0a mis en ligne sa nouvelle enqu\u00eate Rare Barometer sur ce qui vous aide \u00e0 vivre avec une maladie rare !<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Elle permettra de mieux comprendre votre exp\u00e9rience en vous posant des questions sur la mani\u00e8re dont vous g\u00e9rez le stress au quotidien, le soutien sur lequel vous pouvez compter ou la mani\u00e8re dont vous parvenez \u00e0 apprendre, travailler ou contribuer \u00e0 votre communaut\u00e9 tout en vivant avec une maladie rare ou non diagnostiqu\u00e9e. Cela permettra de faire des demandes concr\u00e8tes pour que les malades et leur famille vivent pleinement leur vie.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><u>Pour faire entendre votre voix et partager votre exp\u00e9rience<\/u><\/strong>, nous vous invitons \u00e0 prendre <strong>20 minutes<\/strong> pour r\u00e9pondre \u00e0 l&#8217;enqu\u00eate.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Les r\u00e9sultats globaux seront communiqu\u00e9s aux participants \u00e0 l&#8217;enqu\u00eate, aux associations de malades, aux d\u00e9cideurs politiques et au grand public, afin d\u2019amener des changements concrets pour les personnes vivants &nbsp;avec une maladie rare et non diagnostiqu\u00e9es.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Vous pouvez r\u00e9pondre au questionnaire <mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-luminous-vivid-orange-color\">avant le 16 novembre<\/mark><\/strong> <a href=\"https:\/\/www.sphinxonline.com\/surveyserver\/s\/EURORDIS75\/RB_MH\/FR.htm\" target=\"_blank\" rel=\"noreferrer noopener\">en cliquant ici<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nous vous remercions d&#8217;avance pour votre participation.<\/p>\n\n\n\n<p class=\"has-cyan-bluish-gray-background-color has-background has-small-font-size wp-block-paragraph\"><a href=\"http:\/\/www.eurordis.org\/\" target=\"_blank\" rel=\"noreferrer noopener\"><u>EURORDIS-Rare Diseases Europe<\/u><\/a> est une f\u00e9d\u00e9ration regroupant plus de 1000 associations de patients atteints de maladies rares dans 75 pays. Cette enqu\u00eate est ouverte \u00e0 toutes les personnes vivant une maladie rare ou non diagnostiqu\u00e9e et aux membres de leur famille, quel que soit leur pays de r\u00e9sidence. Elle est disponible en 25 langues.\u00a0Rare Barometer est conforme au\u00a0<a href=\"https:\/\/www.cnil.fr\/fr\/reglement-europeen-protection-donnees\" target=\"_blank\" rel=\"noreferrer noopener\">r\u00e8glement g\u00e9n\u00e9ral sur la protection des donn\u00e9es (RGPD).<\/a>\u00a0Vous trouverez plus d&#8217;informations sur l&#8217;enqu\u00eate ici :\u00a0<a href=\"http:\/\/tiny.cc\/RB-MH-info\" target=\"_blank\" rel=\"noreferrer noopener\">tiny.cc\/RB-MH-info<\/a> Si vous avez des questions pendant votre participation \u00e0 cette enqu\u00eate, vous pouvez contacter\u00a0<a href=\"mailto:rare.barometer@eurordis.org\" target=\"_blank\" rel=\"noreferrer noopener\">rare.barometer@eurordis.org<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Vous, ou un membre de votre famille, vivez avec l&#8217;ataxie de Friedreich.&nbsp; EURORDIS-Rare Diseases Europe \u00a0a mis en ligne sa nouvelle enqu\u00eate Rare Barometer sur ce qui vous aide \u00e0 vivre avec une maladie rare ! Elle permettra de mieux comprendre votre exp\u00e9rience en vous posant des questions sur la mani\u00e8re dont vous g\u00e9rez le [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":12608,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"ocean_front_end_style_editor":"no","ocean_post_layout":"","ocean_both_sidebars_style":"","ocean_both_sidebars_content_width":0,"ocean_both_sidebars_sidebars_width":0,"ocean_sidebar":"0","ocean_second_sidebar":"0","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":"0","ocean_custom_header_template":"0","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":"0","ocean_menu_typo_font_family":"0","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":"0","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":[44],"tags":[],"class_list":["post-12607","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites-generales","entry","has-media","owp-thumbs-layout-horizontal","owp-btn-normal","owp-tabs-layout-section","has-no-thumbnails"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Barom\u00e8tre europ\u00e9en &quot;Rare&quot; - Association Fran\u00e7aise Ataxie de Friedreich<\/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:\/\/www.afaf.asso.fr\/2025\/10\/13\/barometre-europeen-rare\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Barom\u00e8tre europ\u00e9en &quot;Rare&quot; - Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"og:description\" content=\"Vous, ou un membre de votre famille, vivez avec l&#8217;ataxie de Friedreich.&nbsp; EURORDIS-Rare Diseases Europe \u00a0a mis en ligne sa nouvelle enqu\u00eate Rare Barometer sur ce qui vous aide \u00e0 vivre avec une maladie rare ! 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