{"id":3399,"date":"2025-06-18T11:49:13","date_gmt":"2025-06-18T09:49:13","guid":{"rendered":"https:\/\/www.chu-tours.fr\/pemr-cvl\/?page_id=3399"},"modified":"2025-06-18T11:50:27","modified_gmt":"2025-06-18T09:50:27","slug":"webinaire-document-complementaire-mdph-pour-les-maladies-rares-et-handicaps-rares","status":"publish","type":"page","link":"https:\/\/www.chu-tours.fr\/pemr-cvl\/webinaire-document-complementaire-mdph-pour-les-maladies-rares-et-handicaps-rares\/","title":{"rendered":"Webinaire : Document compl\u00e9mentaire MDPH pour les maladies rares et handicaps rares"},"content":{"rendered":"<p style=\"text-align: justify;\">Dans le cadre d\u2019une d\u00e9marche collective nationale et sous l\u2019impulsion de la CNSA, le GNCHR et les Fili\u00e8res de Sant\u00e9 Maladies Rares (FSMR) ont d\u00e9velopp\u00e9 un document compl\u00e9mentaire de transmission d\u2019informations \u00e0 la MDPH pour les personnes en situation de handicaps rares ou de maladies rares.<\/p>\n<p style=\"text-align: justify;\">Ce webinaire propose une pr\u00e9sentation du document mais aussi de faire le point apr\u00e8s plus d\u2019un an de mise \u00e0 disposition de ce dernier.<\/p>\n<p style=\"text-align: justify;\">Comment les personnes concern\u00e9es s\u2019en sont-elles saisies ? Quelles plus-values pour les aidants et les familles ? Quels retours d\u2019exp\u00e9riences de la part des professionnels des MDPH ? Quels impacts sur les parcours ?<\/p>\n<p style=\"text-align: justify;\"><strong>Ce webinaire se tiendra le jeudi 26 juin 2025 de 14h \u00e0 16h.<\/strong><\/p>\n<ul>\n<li style=\"text-align: justify;\">Inscription gratuite mais obligatoire via le lien suivant : <a href=\"https:\/\/docs.google.com\/forms\/d\/e\/1FAIpQLSfKvPJvjnShNmvQv45F0DDnvFvd9bMjkxRU84s95p4nVShpuw\/viewform\" target=\"_blank\" rel=\"noopener\">Information Document compl\u00e9mentaires MDPH Maladies rares et Handicaps rares<\/a><\/li>\n<\/ul>\n<p style=\"text-align: center;\"><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-3397 size-full\" src=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/06\/webinaire-gt-inter-fsmr.png\" alt=\"Webinaire : Document compl\u00e9mentaire MDPH pour les maladies rares et handicaps rares\" width=\"488\" height=\"488\" srcset=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/06\/webinaire-gt-inter-fsmr.png 488w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/06\/webinaire-gt-inter-fsmr-300x300.png 300w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/06\/webinaire-gt-inter-fsmr-150x150.png 150w, https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2025\/06\/webinaire-gt-inter-fsmr-40x40.png 40w\" sizes=\"(max-width: 488px) 100vw, 488px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dans le cadre d\u2019une d\u00e9marche collective nationale et sous l\u2019impulsion de la CNSA, le GNCHR et les Fili\u00e8res de Sant\u00e9 Maladies Rares (FSMR) ont d\u00e9velopp\u00e9 un document compl\u00e9mentaire de transmission d\u2019informations \u00e0 la MDPH pour les personnes en situation de handicaps rares ou de maladies rares. Ce webinaire propose une pr\u00e9sentation du document mais aussi [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":3398,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"publishpress_future_action":{"enabled":false,"date":"2026-04-22 07:17:46","action":"change-status","newStatus":"draft","terms":[],"taxonomy":""},"_links":{"self":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/3399"}],"collection":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/comments?post=3399"}],"version-history":[{"count":2,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/3399\/revisions"}],"predecessor-version":[{"id":3403,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/3399\/revisions\/3403"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/media\/3398"}],"wp:attachment":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/media?parent=3399"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}