{"id":341,"date":"2021-11-28T09:09:50","date_gmt":"2021-11-28T08:09:50","guid":{"rendered":"https:\/\/cerenef.org\/?page_id=341"},"modified":"2023-12-07T12:58:10","modified_gmt":"2023-12-07T11:58:10","slug":"associations-de-patients-neurofibromatoses","status":"publish","type":"post","link":"https:\/\/cerenef.org\/en\/associations-de-patients-neurofibromatoses\/","title":{"rendered":"Meet other patients"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"341\" class=\"elementor elementor-341\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-e927665 elementor-section-boxed elementor-section-height-default elementor-section-height-default elementor-invisible\" data-id=\"e927665\" 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-e955019\" data-id=\"e955019\" 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-a3747f0 elementor-widget elementor-widget-image\" data-id=\"a3747f0\" 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\/01\/groupe-de-patients.jpg\" 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-2e3ac96f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2e3ac96f\" 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-588d51ea\" data-id=\"588d51ea\" 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-1bb2f7d8 elementor-widget elementor-widget-text-editor\" data-id=\"1bb2f7d8\" 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>In the field of rare diseases, various organisations have been created to help patients and promote patient care and research.<\/p><p>The referralcentre of the Henri-Mondor Hospital has an agreement with the Neurofibromatosis and Recklinghausen Association (Association Neurofibromatosis et Recklinghausen, ANR), in which Professor Pierre Wolkenstein chairs its scientific committee. It represents mostgroups, finances research, and participates in institutional work such as the drafting of the PNDS.<\/p><p>Other organisations exist on the internet. However, they do not have an agreement with the referral centre.<\/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-2a19cb3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2a19cb3\" 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-0eb17fa\" data-id=\"0eb17fa\" 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-455ed25 elementor-widget elementor-widget-toggle\" data-id=\"455ed25\" 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-7271\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-7271\" 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\">The Neurofibromatosis and Recklinghausen Association (Association Neurofibromatosis et Recklinghausen, ANR)<\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-7271\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-7271\"><p>Recognised as an organisationof public interest since 2004, the ANR, on a 100% voluntary basis, has the following main goals:<\/p><ul><li>To listen to patients and their loved ones.<\/li><li>To direct them to the relevant medical teams.<\/li><li>To inform them of the latest research developments.<\/li><li>To disseminate information to the medical world, paramedical, and to the general public.<\/li><li>Fundraising (information and research).<\/li><li>To support research by participating in its work as well as funding projects.<\/li><\/ul><hr \/><p><a href=\"https:\/\/cerenef.org\/wp-content\/uploads\/2021\/11\/Livret_asso_2020-web.pdf\" target=\"_blank\" rel=\"noopener\">Booklet of the association (French version)<\/a><br \/><a href=\"https:\/\/www.anrfrance.fr\/\" target=\"_blank\" rel=\"noopener\" data-wplink-edit=\"true\">Website<\/a><\/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-7272\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-7272\" 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\">Cap NF foundation<\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t<div id=\"elementor-tab-content-7272\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-7272\"><p>Created in January 2017 at the initiative of the Neurofibromatosis and Recklinghausen Association, the Cap NF Foundation represents a sustainable and effective tool for fundraising, supporting, and funding researchtothe benefit of thehealthcare community.<\/p><p>It has the following missions:<\/p><ul><li>To stimulate initiatives in order to improve the diagnosis, prevention, research, treatment, and knowledge of neurofibromatosis type 1, neurofibromatosis type 2, schwannomatosis, Legius syndrome, any segmental form of these diseases, and any other pathology belonging to the group of neurofibromatosis.<\/li><li>To inform both the general public and the healthcare community about neurofibromatosis by all means of communication.<\/li><\/ul><hr \/><p><a href=\"https:\/\/dons.fondationdefrance.org\/CAP_NF\/\">To support the foundation<\/a><br \/><a href=\"https:\/\/www.fondationdefrance.org\/fr\/fondation\/fondation-cap-nf-combattre-les-tumeurs-de-lenfant-et-de-ladulte\" target=\"_blank\" rel=\"noopener\">Website<\/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-6ccb7b0 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6ccb7b0\" 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-50 elementor-top-column elementor-element elementor-element-a63fe72\" data-id=\"a63fe72\" 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-e27619f elementor-widget elementor-widget-video\" data-id=\"e27619f\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/A08sgIZgmlA&quot;,&quot;video_type&quot;:&quot;youtube&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=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\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-50 elementor-top-column elementor-element elementor-element-a2e1d69\" data-id=\"a2e1d69\" 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-e40ebfd elementor-widget elementor-widget-video\" data-id=\"e40ebfd\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/uBJnXSZDf6E&quot;,&quot;video_type&quot;:&quot;youtube&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=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\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-5a6e144 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5a6e144\" 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-50 elementor-top-column elementor-element elementor-element-9589811\" data-id=\"9589811\" 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-34332f1 elementor-widget elementor-widget-image\" data-id=\"34332f1\" 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\t<a href=\"https:\/\/www.anrfrance.fr\/\" target=\"_blank\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"341\" height=\"250\" src=\"https:\/\/cerenef.org\/wp-content\/uploads\/2021\/11\/logo-anr.jpg\" class=\"elementor-animation-shrink attachment-full size-full wp-image-403\" alt=\"Association Neurofibromatoses et Recklinghausen\" srcset=\"https:\/\/cerenef.org\/wp-content\/uploads\/2021\/11\/logo-anr.jpg 341w, https:\/\/cerenef.org\/wp-content\/uploads\/2021\/11\/logo-anr-300x220.jpg 300w\" sizes=\"(max-width: 341px) 100vw, 341px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-2fd2720\" data-id=\"2fd2720\" 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-8dc5450 elementor-widget elementor-widget-image\" data-id=\"8dc5450\" 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\t<a href=\"https:\/\/www.anrfrance.fr\/page\/123995-fondation-cap-nf\" target=\"_blank\">\n\t\t\t\t\t\t\t<img decoding=\"async\" width=\"204\" height=\"250\" src=\"https:\/\/cerenef.org\/wp-content\/uploads\/2021\/11\/logo-ose.jpg\" class=\"elementor-animation-shrink attachment-full size-full wp-image-350\" alt=\"Fondation Cap NF\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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<\/div>","protected":false},"excerpt":{"rendered":"<p>Dans le domaine des maladies rares, des associations se sont structur\u00e9es pour aider les patients, promouvoir le soin et la recherche. Le centre de r\u00e9f\u00e9rence de l&rsquo;h\u00f4pital Henri-Mondor a pass\u00e9 une convention avec l\u2019Association Neurofibromatoses et Recklinghausen (ANR) et le Pr Pierre Wolkenstein pr\u00e9side son comit\u00e9 scientifique. Elle repr\u00e9sente la grande majorit\u00e9 des associatifs, finance&hellip;&nbsp;<\/p>\n<div class=\"read-more-wrapper\"><a href=\"https:\/\/cerenef.org\/en\/associations-de-patients-neurofibromatoses\/\" class=\"button button-secondary\" rel=\"bookmark\">\u279c Read more<span class=\"screen-reader-text\">Meet other patients<\/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-341","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\/341","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=341"}],"version-history":[{"count":0,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/posts\/341\/revisions"}],"wp:attachment":[{"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/media?parent=341"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/categories?post=341"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cerenef.org\/en\/wp-json\/wp\/v2\/tags?post=341"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}