{"id":327662,"date":"2021-10-20T14:00:00","date_gmt":"2021-10-20T12:00:00","guid":{"rendered":"https:\/\/medizinonline.com\/les-podcasts-donnent-un-apercu-des-maladies-rares\/"},"modified":"2021-10-20T14:00:00","modified_gmt":"2021-10-20T12:00:00","slug":"les-podcasts-donnent-un-apercu-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/medizinonline.com\/fr\/les-podcasts-donnent-un-apercu-des-maladies-rares\/","title":{"rendered":"Les podcasts donnent un aper\u00e7u des maladies rares"},"content":{"rendered":"<p><strong>Les maladies rares ont un point commun : peu de gens connaissent vraiment les sympt\u00f4mes et les options de traitement possibles. Trois podcasts diff\u00e9rents vous emm\u00e8nent maintenant dans le monde passionnant de la neuro-immunologie et dans la situation des soins pour les maladies rares.<\/strong><\/p>\n<p> <!--more--> <\/p>\n<p>Dans le podcast &#8220;Let&#8217;s talk Neuro : Le podcast sur la neuro-immunologie&#8221;, diff\u00e9rents aspects concernant les maladies neuro-immunologiques rares que sont la myasth\u00e9nie grave (MG) et les maladies du spectre de la neuromy\u00e9lite optique (NMOSD) sont abord\u00e9s. Martin Grond, directeur m\u00e9dical et m\u00e9decin-chef du service de neurologie de l&#8217;h\u00f4pital de Siegen, a interview\u00e9 des experts sur les possibilit\u00e9s et les limites de la num\u00e9risation dans le quotidien neurologique ou sur le stress mental qui peut \u00eatre associ\u00e9 \u00e0 la myasth\u00e9nie grave. Cinq \u00e9pisodes ont \u00e9t\u00e9 publi\u00e9s jusqu&#8217;\u00e0 pr\u00e9sent. L&#8217;initiative change4RARE vise \u00e0 rassembler et \u00e0 rendre accessibles les connaissances sur les soins des maladies rares dans leur ensemble. Dans le podcast correspondant, le professeur Christian Dierks, avocat et m\u00e9decin sp\u00e9cialiste, m\u00e8ne huit entretiens avec des experts sur le th\u00e8me &#8220;Acc\u00e8s &#8211; limites \u00e9conomiques et \u00e9quit\u00e9 dans la prise en charge des patients atteints de maladies rares&#8221;. Le sujet est abord\u00e9 sous diff\u00e9rentes perspectives : droit, association de m\u00e9decins, fabricants de m\u00e9dicaments, \u00e9thique, patients, science m\u00e9dicale, caisses d&#8217;assurance maladie ou \u00e9conomie de la sant\u00e9. Comme pour de nombreuses autres maladies rares, le chemin vers le diagnostic de l&#8217;hypophosphatasie (HPP) peut \u00eatre une odyss\u00e9e pour le patient. Le diagnostic et le diagnostic diff\u00e9rentiel de l&#8217;HPP ainsi que les options de traitement actuelles sont donc les th\u00e8mes de ce podcast. Le professeur Uwe Maus, m\u00e9decin-chef en endoproth\u00e8se et en ost\u00e9ologie et sp\u00e9cialiste en orthop\u00e9die et en chirurgie traumatologique \u00e0 l&#8217;h\u00f4pital universitaire de D\u00fcsseldorf, apporte un \u00e9clairage sur cette maladie rare du point de vue de la chirurgie orthop\u00e9dique et traumatologique.<\/p>\n<p>Les podcasts peuvent \u00eatre consult\u00e9s \u00e0 l&#8217;adresse suivante :<\/p>\n<p><strong>www.alexion.de\/service\/podcasts<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-size:11px\"><em>Source :&nbsp;Alexion Pharma Germany GmbH<\/em><\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-size:11px\"><em>InFo NEUROLOGIE &amp; PSYCHIATRIE 2021 ; 19(4) : 33<\/em><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Les maladies rares ont un point commun : peu de gens connaissent vraiment les sympt\u00f4mes et les options de traitement possibles. Trois podcasts diff\u00e9rents vous emm\u00e8nent maintenant dans le monde&hellip;<\/p>\n","protected":false},"author":7,"featured_media":111082,"comment_status":"closed","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"pmpro_default_level":"","cat_1_feature_home_top":false,"cat_2_editor_pick":false,"csco_eyebrow_text":"Neuroimmunologie","footnotes":""},"category":[11531,11545,11383,11549],"tags":[19130,19128],"powerkit_post_featured":[],"class_list":["post-327662","post","type-post","status-publish","format-standard","has-post-thumbnail","category-formation-continue","category-marche-medecine","category-neurologie-fr","category-rx-fr","tag-neuro-fr","tag-podcast-fr","pmpro-has-access"],"acf":[],"publishpress_future_action":{"enabled":false,"date":"2026-07-02 04:48:51","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"wpml_current_locale":"fr_FR","wpml_translations":{"it_IT":{"locale":"it_IT","id":327664,"slug":"i-podcast-forniscono-informazioni-sulle-malattie-rare","post_title":"I podcast forniscono informazioni sulle malattie rare","href":"https:\/\/medizinonline.com\/it\/i-podcast-forniscono-informazioni-sulle-malattie-rare\/"},"pt_PT":{"locale":"pt_PT","id":327667,"slug":"os-podcasts-fornecem-uma-visao-das-doencas-raras","post_title":"Os podcasts fornecem uma vis\u00e3o das doen\u00e7as raras","href":"https:\/\/medizinonline.com\/pt-pt\/os-podcasts-fornecem-uma-visao-das-doencas-raras\/"},"es_ES":{"locale":"es_ES","id":327635,"slug":"los-podcasts-ofrecen-una-vision-de-las-enfermedades-raras","post_title":"Los podcasts ofrecen una visi\u00f3n de las enfermedades raras","href":"https:\/\/medizinonline.com\/es\/los-podcasts-ofrecen-una-vision-de-las-enfermedades-raras\/"}},"_links":{"self":[{"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/posts\/327662","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/comments?post=327662"}],"version-history":[{"count":0,"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/posts\/327662\/revisions"}],"wp:attachment":[{"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/media?parent=327662"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/category?post=327662"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/tags?post=327662"},{"taxonomy":"powerkit_post_featured","embeddable":true,"href":"https:\/\/medizinonline.com\/fr\/wp-json\/wp\/v2\/powerkit_post_featured?post=327662"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}