{"id":987786971,"date":"2025-10-01T08:46:00","date_gmt":"2025-10-01T07:46:00","guid":{"rendered":"https:\/\/p4h.world\/?post_type=events&#038;p=987786971"},"modified":"2025-12-16T21:07:55","modified_gmt":"2025-12-16T20:07:55","slug":"financement-de-la-sante-et-protection-sociale-pour-les-maladies-rares","status":"publish","type":"events","link":"https:\/\/p4h.world\/fr\/events\/financement-de-la-sante-et-protection-sociale-pour-les-maladies-rares\/","title":{"rendered":"Financement de la sant\u00e9 et protection sociale pour les maladies rares"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;! !! N&#039;\u00c9DITEZ PAS ! !! &#8221; _builder_version=&#8221;4.19.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row admin_label=&#8221;!!! PLEASE DO NOT EDIT !!!&#8221; _builder_version=&#8221;4.19.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.19.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;TEXT &#8211; BLOCK 10 &#8211; blue box&#8221; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;15px&#8221; custom_margin=&#8221;10px||40px||false|false&#8221; custom_padding=&#8221;20px|25px|20px|25px|false|false&#8221; hover_enabled=&#8221;0&#8243; custom_css_main_element=&#8221;background:#DCE5EA;&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p style=\"font-size: 17px; font-weight: bold;\">Rare Diseases International (RDI) et le r\u00e9seau P4H sont fiers de partager les r\u00e9sultats de leur initiative commune sur le financement de la sant\u00e9 et la protection sociale de la sant\u00e9 pour les maladies rares.<\/p>\n<p style=\"font-weight: normal;\"><a href=\"https:\/\/p4h.world\/app\/uploads\/2025\/12\/RDI-P4H-Webinar-Report_v2.pdf\">Lire le rapport du webinaire<\/a><\/p>\n<p>[\/et_pb_text][et_pb_video src=&#8221;https:\/\/p4h.world\/app\/uploads\/2025\/10\/p4h_Webinar-Health-Financing-Social-Health-Protection-Rare-Diseases.mp4&#8243; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;15px||30px||false|false&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_video][et_pb_text admin_label=&#8221;TO BE EDITED &#8211; TEXT OF THE NEWS &#8211; BLOCK 1 &#8221; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||1em||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><a href=\"https:\/\/www.rarediseasesinternational.org\/\">Rare Diseases International (RDI)<\/a> et le r\u00e9seau P4H se sont associ\u00e9s pour permettre un plaidoyer et une collaboration \u00e0 l&#8217;\u00e9chelle mondiale afin d&#8217;influencer et de soutenir l&#8217;innovation dans les modalit\u00e9s de financement de la sant\u00e9 et la protection sociale de la sant\u00e9 qui favorisent concr\u00e8tement une couverture m\u00e9dicale efficace, un meilleur acc\u00e8s et une protection financi\u00e8re ad\u00e9quate pour les personnes vivant avec des maladies rares.<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;TO BE EDITED &#8211; TEXT OF THE NEWS &#8211; BLOCK 2&#8243; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||1em||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>RDI et P4H ont contact\u00e9 les <a href=\"https:\/\/www.rarediseasesinternational.org\/members-list\/\">organisations membres de RDI<\/a>, les <a href=\"https:\/\/p4h.world\/fr\/qui-sommes-nous\/personnes-de-contact-dans-les-pays\/\">points focaux nationaux de P4H<\/a>, des experts de l&#8217;<a href=\"http:\/\/www.who.int\/\">Organisation mondiale de la sant\u00e9 (OMS)<\/a>, des consultants de l&#8217;<a href=\"https:\/\/www.oecd.org\/it.html\">Organisation de coop\u00e9ration et de d\u00e9veloppement \u00e9conomiques (OCDE)<\/a> et des professionnels afin d&#8217;\u00e9changer des informations sur les exp\u00e9riences nationales en mati\u00e8re de financement du traitement des maladies rares. Ces informations et donn\u00e9es pr\u00e9liminaires ont \u00e9t\u00e9 examin\u00e9es et valid\u00e9es afin d&#8217;\u00e9tablir une liste restreinte de pays de diff\u00e9rentes r\u00e9gions. Ensuite, la situation des maladies rares dans 11 pays a \u00e9t\u00e9 document\u00e9e au moyen de questionnaires et d&#8217;entretiens structur\u00e9s avec des sources primaires.<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;TO BE EDITED &#8211; TEXT OF THE NEWS &#8211; BLOCK 3&#8243; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||1em||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Cette \u00e9tude transnationale explore les modalit\u00e9s actuelles de financement de la sant\u00e9 et la structure de protection sociale pour les maladies rares, les d\u00e9fis existants et les plans d&#8217;action politique dans chaque pays et r\u00e9gion. Les r\u00e9sultats de cette \u00e9tude doivent servir \u00e0 informer les initiatives politiques mondiales et nationales li\u00e9es \u00e0 la couverture sanitaire universelle et aux maladies rares, et offrir des possibilit\u00e9s de r\u00e9duire les difficult\u00e9s financi\u00e8res et d&#8217;am\u00e9liorer la qualit\u00e9 de vie des personnes vivant avec des maladies rares et de leurs familles dans le monde entier. <\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;TO BE EDITED &#8211; TEXT OF THE NEWS &#8211; BLOCK 4&#8243; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||1em||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Ce webinaire a pr\u00e9sent\u00e9 le projet de collaboration RDI-P4H et ses objectifs, a pr\u00e9sent\u00e9 les r\u00e9sultats pr\u00e9liminaires et les recommandations, a discut\u00e9 de l&#8217;importance des r\u00e9sultats entre experts, et a recueilli les perspectives, les commentaires et les id\u00e9es des participants et des pr\u00e9sentateurs afin de partager et d&#8217;affiner le projet d&#8217;article sur les r\u00e9sultats avant qu&#8217;il ne soit soumis pour publication.<\/p>\n<p>[\/et_pb_text][ba_gradient_heading title=&#8221;INTERVENANTS&#8221; html_tag=&#8221;h4&#8243; primary_color=&#8221;#5EAABC&#8221; primary_color_location=&#8221;0&#8243; secondary_color=&#8221;#5EAABC&#8221; secondary_color_location=&#8221;0&#8243; admin_label=&#8221;SPEAKERS&#8221; module_id=&#8221;part2&#8243; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; title_font_size=&#8221;20px&#8221; title_letter_spacing=&#8221;0.5px&#8221; title_line_height=&#8221;1em&#8221; custom_margin=&#8221;15px||||false|false&#8221; border_width_bottom=&#8221;2px&#8221; border_color_bottom=&#8221;#5EAABC&#8221; global_colors_info=&#8221;{}&#8221;][\/ba_gradient_heading][et_pb_text _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;15px&#8221; text_line_height=&#8221;20px&#8221; background_color=&#8221;#dce5ea&#8221; custom_padding=&#8221;20px|20px|20px|20px|false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div style=\"font-size: 15px; line-height: 24px;\"><a href=\"https:\/\/www.linkedin.com\/in\/finn-guo-b169556a\/\">Finn GUO<\/a>, <a href=\"https:\/\/www.linkedin.com\/company\/illness-challenge-foundation\/\">Illness Challenge Foundation \u75c5\u75db\u6311\u6218\u57fa\u91d1\u4f1a,<\/a> Chine<br \/><a href=\"https:\/\/www.linkedin.com\/in\/salma-khalfi\/\">Salma K.<\/a>, <a href=\"https:\/\/www.linkedin.com\/company\/cnam-caisse-nationale-assurance-maladie\/\">CNAM<\/a>, France<br \/><a href=\"https:\/\/www.linkedin.com\/in\/ainur-aiypkhanova-6b3a2621\/\">Ainur Aiypkhanova<\/a>, Conseil scientifique et technique du minist\u00e8re de la sant\u00e9, Kazakhstan<br \/><a href=\"https:\/\/www.linkedin.com\/in\/susan-horton-739a7211\/\">Susan Horton<\/a>, <a href=\"https:\/\/www.linkedin.com\/company\/uwaterloo\/\">Universit\u00e9 de Waterloo<\/a><br \/><a href=\"https:\/\/www.linkedin.com\/in\/lou-garrison-37b4961\/\">Lou Garrison<\/a>, <a href=\"https:\/\/www.linkedin.com\/company\/the-choice-institute\/\">The CHOICE Institute<\/a>; <a href=\"https:\/\/www.linkedin.com\/company\/university-of-washington\/\">Universit\u00e9 de Washington<\/a>; Office of Health Economics<br \/><a href=\"https:\/\/www.linkedin.com\/in\/joseph-b-babigumira\/\">Joseph B. Babigumira<\/a>, GHE Consulting<br \/><a href=\"https:\/\/p4h.world\/en\/user\/claude-meyer\/\">Claude Meyer,<\/a> <a href=\"https:\/\/www.linkedin.com\/in\/p4h-network-796aa0112\/\">R\u00e9seau P4H<\/a>, <a href=\"https:\/\/www.linkedin.com\/company\/world-health-organization\/\">Organisation mondiale de la sant\u00e9<\/a><br \/><a href=\"https:\/\/p4h.world\/en\/user\/aungsumalee-pholpark\/\">Aungsumalee Pholpark<\/a>, <a href=\"https:\/\/www.linkedin.com\/in\/p4h-network-796aa0112\/\">R\u00e9seau P4H<\/a><br \/><a href=\"https:\/\/www.linkedin.com\/in\/alexandraheumberperry\/\">Alexandra Heumber Perry<\/a>, Rare Diseases International<br \/><a href=\"https:\/\/www.linkedin.com\/in\/alanna-miller-22a4141b2\/\">Alanna Miller<\/a>, Rare Diseases International<\/div>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Rare Diseases International (RDI) et le r\u00e9seau P4H sont fiers de partager les r\u00e9sultats de leur initiative commune sur le financement de la sant\u00e9 et la protection sociale de la sant\u00e9 pour les maladies rares. Lire le rapport du webinaireRare Diseases International (RDI) et le r\u00e9seau P4H se sont associ\u00e9s pour permettre un plaidoyer et&#8230;<\/p>\n","protected":false},"author":51,"featured_media":987785016,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":""},"categories":[],"tags":[2454,3067,2632,2629],"acf":[],"_links":{"self":[{"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/events\/987786971"}],"collection":[{"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/events"}],"about":[{"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/types\/events"}],"author":[{"embeddable":true,"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/users\/51"}],"replies":[{"embeddable":true,"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/comments?post=987786971"}],"version-history":[{"count":65,"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/events\/987786971\/revisions"}],"predecessor-version":[{"id":987794157,"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/events\/987786971\/revisions\/987794157"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/media\/987785016"}],"wp:attachment":[{"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/media?parent=987786971"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/categories?post=987786971"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/p4h.world\/fr\/wp-json\/wp\/v2\/tags?post=987786971"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}