{"id":10547,"date":"2024-06-03T11:36:36","date_gmt":"2024-06-03T09:36:36","guid":{"rendered":"https:\/\/www.afaf.asso.fr\/?p=10547"},"modified":"2024-06-03T11:36:38","modified_gmt":"2024-06-03T09:36:38","slug":"participez-aux-webinaires-digprare-sur-linformation-a-la-parentele","status":"publish","type":"post","link":"https:\/\/www.afaf.asso.fr\/2024\/06\/03\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\/","title":{"rendered":"Participez aux webinaires d&#8217;IGPrare sur l&#8217;information \u00e0 la parent\u00e8le !"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Notre association AFAF participe depuis 3 ans \u00e0 un projet de recherche collaboratif qui s&#8217;appelle IGPrare (pour Information G\u00e9n\u00e9tique de la Parent\u00e8le dans les maladies rares).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">L\u2019objectif du projet IGPrare est d\u2019analyser les m\u00e9canismes en jeu lorsqu&#8217;un patient informe un ou des apparent\u00e9s d&#8217;un risque g\u00e9n\u00e9tique dans la famille, de comprendre quelles circonstances et quels facteurs risquent de conduire \u00e0 une incompr\u00e9hension ou \u00e0 un rejet (voire aux deux !) lors de la transmission de l\u2019information \u00e0 la parent\u00e8le. Mais il est surtout de proposer des solutions, aux malades dans leur diversit\u00e9, et aux professionnels, pour am\u00e9liorer la transmission de l\u2019information g\u00e9n\u00e9tique au sein de la famille.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pour y parvenir, un questionnaire a \u00e9t\u00e9 construit avec des chercheurs et des professionnels de sant\u00e9, et des exp\u00e9riences et t\u00e9moignages de personnes ayant eu \u00e0 informer leurs apparent\u00e9s ont \u00e9t\u00e9 recueillis.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Vous y avez d&#8217;ailleurs s\u00fbrement contribu\u00e9 !<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Participez \u00e0 ces webinaires pour conna\u00eetre les r\u00e9sultats de cette recherche et vous tenir&nbsp;<a href=\"https:\/\/igprare.fr\/\" target=\"_blank\" rel=\"noreferrer noopener\">inform\u00e9.es<\/a>&nbsp;de la suite !<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">&#8211;&nbsp;<strong>mercredi 5 juin de 17h30 \u00e0 19h<\/strong>&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">&#8211;&nbsp;<strong>vendredi 14 juin de 10h30 \u00e0 12h30<\/strong>&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">N&#8217;h\u00e9sitez pas \u00e0 vous inscrire et \u00e0 partager l&#8217;information.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Lien d&#8217;inscription :&nbsp;<a href=\"https:\/\/forms.gle\/1ABRTHtUaBZBxeJW7\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/forms.gle\/1ABRTHtUaBZBxeJW7<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Notre association AFAF participe depuis 3 ans \u00e0 un projet de recherche collaboratif qui s&#8217;appelle IGPrare (pour Information G\u00e9n\u00e9tique de la Parent\u00e8le dans les maladies rares). L\u2019objectif du projet IGPrare est d\u2019analyser les m\u00e9canismes en jeu lorsqu&#8217;un patient informe un ou des apparent\u00e9s d&#8217;un risque g\u00e9n\u00e9tique dans la famille, de comprendre quelles circonstances et quels [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":10546,"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-10547","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>Participez aux webinaires d&#039;IGPrare sur l&#039;information \u00e0 la parent\u00e8le ! - 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\/2024\/06\/03\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Participez aux webinaires d&#039;IGPrare sur l&#039;information \u00e0 la parent\u00e8le ! - Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"og:description\" content=\"Notre association AFAF participe depuis 3 ans \u00e0 un projet de recherche collaboratif qui s&#8217;appelle IGPrare (pour Information G\u00e9n\u00e9tique de la Parent\u00e8le dans les maladies rares). L\u2019objectif du projet IGPrare est d\u2019analyser les m\u00e9canismes en jeu lorsqu&#8217;un patient informe un ou des apparent\u00e9s d&#8217;un risque g\u00e9n\u00e9tique dans la famille, de comprendre quelles circonstances et quels [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.afaf.asso.fr\/2024\/06\/03\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\/\" \/>\n<meta property=\"og:site_name\" content=\"Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"article:published_time\" content=\"2024-06-03T09:36:36+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-06-03T09:36:38+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2024\/06\/logo-IGPrare.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"400\" \/>\n\t<meta property=\"og:image:height\" content=\"300\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Caroline Gaboriau\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline Gaboriau\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2024\\\/06\\\/03\\\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2024\\\/06\\\/03\\\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\\\/\"},\"author\":{\"name\":\"Caroline Gaboriau\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#\\\/schema\\\/person\\\/7366aa03c1779ab28140e42231ed7b28\"},\"headline\":\"Participez aux webinaires d&#8217;IGPrare sur l&#8217;information \u00e0 la parent\u00e8le !\",\"datePublished\":\"2024-06-03T09:36:36+00:00\",\"dateModified\":\"2024-06-03T09:36:38+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2024\\\/06\\\/03\\\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\\\/\"},\"wordCount\":230,\"publisher\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2024\\\/06\\\/03\\\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2024\\\/06\\\/logo-IGPrare.jpg\",\"articleSection\":[\"Actualit\u00e9s g\u00e9n\u00e9rales\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2024\\\/06\\\/03\\\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\\\/\",\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2024\\\/06\\\/03\\\/participez-aux-webinaires-digprare-sur-linformation-a-la-parentele\\\/\",\"name\":\"Participez aux webinaires d'IGPrare sur l'information \u00e0 la parent\u00e8le ! 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