{"id":4688,"date":"2022-02-06T11:24:30","date_gmt":"2022-02-06T10:24:30","guid":{"rendered":"http:\/\/www.afaf.asso.fr\/?p=4688"},"modified":"2023-01-17T21:41:02","modified_gmt":"2023-01-17T20:41:02","slug":"protocole-national-de-diagnostic-et-de-soins-pnds-ataxie-de-friedreich","status":"publish","type":"post","link":"https:\/\/www.afaf.asso.fr\/2022\/02\/06\/protocole-national-de-diagnostic-et-de-soins-pnds-ataxie-de-friedreich\/","title":{"rendered":"Parution du Protocole National de Diagnostic et de Soins (PNDS) dans l\u2019Ataxie de Friedreich"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"4688\" class=\"elementor elementor-4688\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5d3e14e8 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5d3e14e8\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-32b7a6c5\" data-id=\"32b7a6c5\" 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-7866b193 elementor-widget elementor-widget-text-editor\" data-id=\"7866b193\" 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<h3>IMPORTANT : Parution du Protocole National de Diagnostic et de Soins (PNDS) dans l\u2019Ataxie de Friedreich<\/h3><p>Extrait : \u00ab<strong> L\u2019objectif de ce Protocole National de Diagnostic et de Soins (PNDS) est d\u2019expliciter aux professionnels concern\u00e9s, m\u00e9decins g\u00e9n\u00e9ralistes et sp\u00e9cialistes, et \u00e0 tous les soignants impliqu\u00e9s, la prise en charge diagnostique et th\u00e9rapeutique optimale actuelle et le parcours de soins d\u2019un patient atteint d\u2019ataxie de Friedreich. Il a pour but d\u2019optimiser et d\u2019harmoniser la prise en charge et le suivi de la maladie rare sur l\u2019ensemble du territoire. C\u2019est donc un \u00ab r\u00e9f\u00e9rentiel de bonnes pratiques \u00bb pour tout soignant amen\u00e9 \u00e0 accompagner une personne Friedreich \u00bb.<\/strong><\/p><p>\u00a0<\/p><p>Il a \u00e9t\u00e9 \u00e9dit\u00e9 par la Haute Autorit\u00e9 de Sant\u00e9 (HAS) le 14 octobre 2021 et sera mis \u00e0 jour p\u00e9riodiquement.<\/p><p>Il est donc \u00e0 direction des diff\u00e9rents soignants : m\u00e9decin traitant, neurologues adultes et p\u00e9diatriques, g\u00e9n\u00e9ticiens, m\u00e9decins de r\u00e9adaptation, cardiologues, pneumologues, anesth\u00e9sistes, diab\u00e9tologues, ophtalmologues, ORL, orthophonistes, kin\u00e9sith\u00e9rapeutes, psychologues, etc.<\/p><p>\u00a0<\/p><p>Il est le fruit d\u2019un long travail collaboratif de 3 ans men\u00e9 par le Dr Claire Ewenczyk et le Pr Alexandra Du\u0308rr, <strong>Centre de R\u00e9f\u00e9rence Maladies Rares \u00ab Neurog\u00e9n\u00e9tique \u00bb (CRMR NeuroG\u00c8NE)<\/strong>, avec une cinquantaine de contributeurs, \u00e9galement en r\u00e9f\u00e9rence \u00e0 nombreuses publications sur l\u2019AF.<\/p><p>Immense merci \u00e0 tous les contributeurs !<\/p><p>\u00a0<\/p><h3>Informez tous vos soignants de l\u2019existence de ce PNDS !\u00a0<\/h3><p>A retrouver sur\u00a0:<\/p><ul><li><strong>HAS : <\/strong><a href=\"https:\/\/www.has-sante.fr\/jcms\/p_3290014\/fr\/ataxie-de-friedreich\" target=\"_blank\" rel=\"noopener\"><strong>https:\/\/www.has-sante.fr\/jcms\/p_3290014\/fr\/ataxie-de-friedreich<\/strong><\/a><\/li><li><strong>BRAIN-TEAM\u00a0: <\/strong><a href=\"http:\/\/brain-team.fr\/protocolesnationaux\/\" target=\"_blank\" rel=\"noopener\"><strong>http:\/\/brain-team.fr\/protocolesnationaux\/<\/strong><\/a><\/li><li><strong>Centre de R\u00e9f\u00e9rence NeuroG\u00c8NE<\/strong>: <a href=\"http:\/\/brain-team.fr\/crmr-neurogene\/\" target=\"_blank\" rel=\"noopener\"><strong>http:\/\/brain-team.fr\/crmr-neurogene\/<\/strong><\/a><\/li><li><strong>Orphanet\u00a0: <\/strong><a href=\"http:\/\/www.orpha.net\" target=\"_blank\" rel=\"noopener\"><strong>orpha.net<\/strong><\/a><strong> \/ Ataxie de Friedreich<\/strong>\u00a0<\/li><\/ul><h3>\u00a0<\/h3>\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>IMPORTANT : Parution du Protocole National de Diagnostic et de Soins (PNDS) dans l\u2019Ataxie de Friedreich Extrait : \u00ab L\u2019objectif de ce Protocole National de Diagnostic et de Soins (PNDS) est d\u2019expliciter aux professionnels concern\u00e9s, m\u00e9decins g\u00e9n\u00e9ralistes et sp\u00e9cialistes, et \u00e0 tous les soignants impliqu\u00e9s, la prise en charge diagnostique et th\u00e9rapeutique optimale actuelle et [&hellip;]<\/p>\n","protected":false},"author":9,"featured_media":1656,"comment_status":"closed","ping_status":"closed","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":"off","ocean_gallery_id":[],"footnotes":""},"categories":[44],"tags":[],"class_list":["post-4688","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":"<!-- 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