{"id":12545,"date":"2025-09-12T19:09:47","date_gmt":"2025-09-12T17:09:47","guid":{"rendered":"https:\/\/www.afaf.asso.fr\/?p=12545"},"modified":"2025-09-12T19:09:49","modified_gmt":"2025-09-12T17:09:49","slug":"participez-a-la-construction-de-lapplication-de-la-bndmr-qui-aidera-au-quotidien-les-personnes-atteintes-de-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.afaf.asso.fr\/2025\/09\/12\/participez-a-la-construction-de-lapplication-de-la-bndmr-qui-aidera-au-quotidien-les-personnes-atteintes-de-maladies-rares\/","title":{"rendered":"Participez \u00e0 la construction de l&#8217;application de la BNDMR qui aidera au quotidien les personnes atteintes de maladies rares !"},"content":{"rendered":"\n<p class=\"has-text-align-center wp-block-paragraph\"><strong>Application France Maladies Rares &#8211; Priorisation des fonctionnalit\u00e9s<\/strong><img decoding=\"async\" width=\"570\" src=\"https:\/\/ci3.googleusercontent.com\/meips\/ADKq_NaBLtDy-aJH9lU2gPqMi00vXO3vQS--ExKms5LD0XWFy8PWZd_PQkpDxMbtX4QZzs7Nb33bUwz3OQxpWQudyNrLIAgLiC-xiJ04zcrer7yZ55Cbqugz4VB3mysrC_D8wj-q-RUweoqGa8KLmk-2=s0-d-e1-ft#https:\/\/fesr6.img.a.d.sendibm1.com\/im\/sh\/-YdYVHXIkAHi.png?u=SyGgH01HHg313aVp7QOFwq9CBwvw\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La BNDMR d\u00e9veloppe actuellement France Maladies Rares, une application \u00e0 destination de personnes atteintes de maladies rares.\u00a0<br><strong>L&#8217;avis des patients, de leurs aidants et des professionnels de sant\u00e9 est primordial pour d\u00e9finir les priorit\u00e9s de d\u00e9veloppement !<\/strong><br>Suite \u00e0 un recueil des besoins men\u00e9 aupr\u00e8s de la communaut\u00e9, une liste de fonctionnalit\u00e9s potentielles a \u00e9t\u00e9 identifi\u00e9e.\u00a0L&#8217;objectif est maintenant de quantifier l&#8217;int\u00e9r\u00eat pour chacune d&#8217;elles afin d&#8217;\u00e9tablir le cahier des charges de la premi\u00e8re version de l&#8217;application.\u00a0Les fonctionnalit\u00e9s seront d\u00e9velopp\u00e9es progressivement selon les priorit\u00e9s \u00e9tablies et leur faisabilit\u00e9 technique et r\u00e9glementaire.Le questionnaire est organis\u00e9 par th\u00e8mes fonctionnels et prend environ 10 minutes \u00e0 compl\u00e9ter.<\/p>\n\n\n\n<p class=\"has-text-align-center wp-block-paragraph\"><strong>R\u00e9pondez au questionnaire avant\u00a0le 24 septembre au soir\u00a0<\/strong><br><a href=\"https:\/\/fesr6.r.a.d.sendibm1.com\/mk\/cl\/f\/sh\/1f8JIKXwHGYox6FbN6J02wrS2K\/_TWm-9uxl3mB\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/lime.aphp.fr\/index.php\/415776?lang=fr<\/a><br>Une large participation est essentielle pour d\u00e9velopper une application qui r\u00e9ponde r\u00e9ellement aux besoins de la communaut\u00e9 des maladies rares.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Application France Maladies Rares &#8211; Priorisation des fonctionnalit\u00e9s La BNDMR d\u00e9veloppe actuellement France Maladies Rares, une application \u00e0 destination de personnes atteintes de maladies rares.\u00a0L&#8217;avis des patients, de leurs aidants et des professionnels de sant\u00e9 est primordial pour d\u00e9finir les priorit\u00e9s de d\u00e9veloppement !Suite \u00e0 un recueil des besoins men\u00e9 aupr\u00e8s de la communaut\u00e9, une [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":12547,"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-12545","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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