{"id":334,"date":"2021-11-28T08:47:12","date_gmt":"2021-11-28T07:47:12","guid":{"rendered":"https:\/\/cerenef.org\/?page_id=334"},"modified":"2025-10-04T14:24:32","modified_gmt":"2025-10-04T12:24:32","slug":"education-therapeutique-neurofibromatoses","status":"publish","type":"post","link":"https:\/\/cerenef.org\/en\/education-therapeutique-neurofibromatoses\/","title":{"rendered":"Participate in a TPE program"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"334\" class=\"elementor elementor-334\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-d578973 elementor-section-boxed elementor-section-height-default elementor-section-height-default elementor-invisible\" data-id=\"d578973\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;animation&quot;:&quot;fadeInLeft&quot;}\">\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-4ff5c73\" data-id=\"4ff5c73\" 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-a0dcb7b elementor-widget elementor-widget-image\" data-id=\"a0dcb7b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/cerenef.org\/wp-content\/uploads\/2022\/04\/etp-mondor-neurofibromatoses-en.svg\" title=\"CERENEF\" alt=\"CERENEF\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-556b5b1c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"556b5b1c\" 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-943308b\" data-id=\"943308b\" 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-148a546e elementor-widget elementor-widget-text-editor\" data-id=\"148a546e\" 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<p>The Therapeutic Patient Education (TPE) is a practice whose development is growing exponentially. By giving a prominent place to patients as an actor in their health, it aims to \"help patients acquire or maintain the skills they need to best manage their lives with a chronic disease\" (WHO). It also makes it possible to integrate the family environment and the caregivers into this care and to strengthen their involvement.<\/p>\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-59a2590 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"59a2590\" 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-8bee0eb\" data-id=\"8bee0eb\" 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-b876fd1 elementor-widget elementor-widget-toggle\" data-id=\"b876fd1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"toggle.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle\">\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1931\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1931\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\">TPE program for NF1 <\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1931\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1931\"><p>In the dermatology department of the Henri-Mondor Hospital, we have implemented a TPE program for patients with neurofibromatosis type 1 (NF1), a program developed with the involvement of patients. Their active participation is crucial for the development of a didactic, innovative, and above all a useful program!<\/p><p>Our idea is to offer patients with NF1with a series of group workshops or individual consultations adapted to everyone. To do this, we need work closely with patients in order to better address their needs.<\/p><p>We obtained funding from the DGOS  (\"Direction G\u00e9n\u00e9rale de l\u2019Offre de Soins\") to set up this program and obtained the agreement from the ARS (\"Agence R\u00e9gionale de Sant\u00e9\").<\/p><p>In addition to the workshops held at Henri-Mondor Hospital, the team has also developed a digital tool. This interactive online course is a fun and immersive 20-minute game that allows users to explore the key concepts of NF1 at their own pace, from the comfort of their own home. Finally, interactive online conferences, or webinars, are organized by the ETP CERENEF team.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1932\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-1932\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\">Workshops at Henri Mondor Hospital<\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1932\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-1932\">The objectives are, for example, to increase the knowledge about the disease to those who wish so, to offer dietetic workshops, to learn to better express oneself on one's emotions, to be able to participate in discussion groups or experience sharing....For this, a meeting was organised to determine the real needs of patients, adapted to their journeys. Several patients have already been able to participate and share their needs with us. The ideas that emerged from this meeting allowed us to develop the program comprised of different workshops:\n\n<img decoding=\"async\" class=\"aligncenter wp-image-2984 size-full\" title=\"Referral Centre for Neurofibromatosis France\" src=\"https:\/\/cerenef.org\/wp-content\/uploads\/2023\/06\/ETP-ANET-Mondor-English-min.png\" alt=\"Ateliers ETP\" width=\"700\" height=\"auto\" \/><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-toggle-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1933\" class=\"elementor-tab-title\" data-tab=\"3\" role=\"button\" aria-controls=\"elementor-tab-content-1933\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon elementor-toggle-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-closed\"><i class=\"fas fa-caret-right\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-toggle-icon-opened\"><i class=\"elementor-toggle-icon-opened fas fa-caret-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-toggle-title\" tabindex=\"0\">Information and registration<\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-1933\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"3\" role=\"region\" aria-labelledby=\"elementor-tab-title-1933\"><p>Would you like more information about this TPE program?<\/p><p><strong>General information<\/strong><br \/>E-mail: <a href=\"mailto:etp.dermatologie.hmn@aphp.fr\">etp.dermatologie.hmn@aphp.fr<\/a><\/p><p><strong>TPE coordination \u2013 Audrey Colin, state-certified nurse<\/strong><br \/>E-mail: <a href=\"mailto:audrey.colin@aphp.fr\">audrey.colin@aphp.fr<\/a><\/p><p><strong>Registrations \u2013 Alexandra Vo, dermatology department assistant<br \/><\/strong>Tel.: +33 (1) 49 81 25 01 - Fax:+33 (1) 49 81 25 08 \u2013 E-mail: <a href=\"mailto:alexandra.vo@aphp.fr\">alexandra.vo@aphp.fr<\/a><\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-4acd1e7 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4acd1e7\" 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-25 elementor-top-column elementor-element elementor-element-3fd4a23\" data-id=\"3fd4a23\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-748eccc\" data-id=\"748eccc\" 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-7263681 elementor-widget elementor-widget-video\" data-id=\"7263681\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;video_type&quot;:&quot;hosted&quot;,&quot;autoplay&quot;:&quot;yes&quot;,&quot;play_on_mobile&quot;:&quot;yes&quot;,&quot;loop&quot;:&quot;yes&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"e-hosted-video elementor-wrapper elementor-open-inline\">\n\t\t\t\t\t<video class=\"elementor-video\" src=\"https:\/\/cerenef.org\/wp-content\/uploads\/2025\/05\/Teaser_APHP-V2.mp4\" autoplay=\"\" loop=\"\" controls=\"\" playsinline=\"\" controlslist=\"nodownload\" poster=\"https:\/\/cerenef.org\/wp-content\/uploads\/2021\/11\/screen.png\"><\/video>\n\t\t\t\t<\/div>\n\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<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-3066fcc\" data-id=\"3066fcc\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\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>","protected":false},"excerpt":{"rendered":"<p>L\u2019\u00c9ducation Th\u00e9rapeutique du Patient (ETP) est une pratique dont le d\u00e9veloppement cro\u00eet de mani\u00e8re exponentielle. En accordant une place pr\u00e9pond\u00e9rante au patient en tant qu\u2019acteur de sa sant\u00e9, elle vise \u00e0 \u00ab\u00a0aider les patients \u00e0 acqu\u00e9rir ou maintenir les comp\u00e9tences dont ils ont besoin pour g\u00e9rer au mieux leur vie avec une maladie chronique\u00a0\u00bb (OMS).&hellip;&nbsp;<\/p>\n<div class=\"read-more-wrapper\"><a href=\"https:\/\/cerenef.org\/en\/education-therapeutique-neurofibromatoses\/\" class=\"button button-secondary\" rel=\"bookmark\">\u279c Read more<span class=\"screen-reader-text\">Participate in a TPE program<\/span><\/a><\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"neve_meta_sidebar":"","neve_meta_container":"","neve_meta_enable_content_width":"off","neve_meta_content_width":100,"neve_meta_title_alignment":"","neve_meta_author_avatar":"","neve_post_elements_order":"","neve_meta_disable_header":"","neve_meta_disable_footer":"","neve_meta_disable_title":"","neve_meta_reading_time":"","footnotes":""},"categories":[12],"tags":[],"class_list":["post-334","post","type-post","status-publish","format-standard","hentry","category-vivre-avec-une-nf1"],"_links":{"self":[{"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/posts\/334","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/comments?post=334"}],"version-history":[{"count":12,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/posts\/334\/revisions"}],"predecessor-version":[{"id":4172,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/posts\/334\/revisions\/4172"}],"wp:attachment":[{"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/media?parent=334"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/categories?post=334"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/tags?post=334"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}