{"id":220,"date":"2019-01-17T10:21:47","date_gmt":"2019-01-17T09:21:47","guid":{"rendered":"http:\/\/elainternational.eu\/?page_id=220"},"modified":"2024-02-14T09:31:45","modified_gmt":"2024-02-14T08:31:45","slug":"les-centres-experts","status":"publish","type":"page","link":"https:\/\/old.elainternational.eu\/en\/les-centres-experts\/","title":{"rendered":"The expert centers"},"content":{"rendered":"<h2><span style=\"color: #e3158a;\">The centers of expertise:<\/span><\/h2>\n<div class=\"contenuTexte\">\n<p>The reference centres are entities labeled by the Ministry of Health, bringing together highly specialised medical and paramedical skills for comprehensive management of rare diseases as perthe patient&#8217;s needs.<\/p>\n<h3><span style=\"color: #e3158a;\">Their missions:<\/span><\/h3>\n<ul>\n<li>Define a strategy for therapeutic, psychological and social support<\/li>\n<li>Ensure the information and training of the patient and their family<\/li>\n<li>Guide and coordinate non-specialised health professionals participating in the close care of the patient by informing and training them on the pathology and its management<\/li>\n<li>Participate in the epidemiological surveillance of the disease, the promotion and coordination of research and therapeutic trials<\/li>\n<li>Participate in the establishment of good professional practices concerning the disease in conjunction with national and international teams working in the same field<\/li>\n<li>Participate in the dissemination and monitoring of orphan therapies and devices<\/li>\n<li>Enable coordination between centers dealing with the same group of pathologies<\/li>\n<li>To be the interlocutor of administrative authorities and patient associations to improve the care and quality of life of the patient and their family<\/li>\n<\/ul>\n<h3><span style=\"color: #e3158a;\">Reference centres<\/span><\/h3>\n<table style=\"height: 559px;\" width=\"857\">\n<tbody>\n<tr>\n<td width=\"48\"><strong><span style=\"color: #e3158a;\">Country<\/span><\/strong><\/td>\n<td width=\"57\">Cities<\/td>\n<td width=\"85\"><span style=\"color: #e3158a;\">Centers<\/span><\/td>\n<td width=\"227\">Specialities<\/td>\n<td width=\"47\"><\/td>\n<\/tr>\n<tr>\n<td width=\"48\"><strong><span style=\"color: #e3158a;\">France<\/span><\/strong><\/td>\n<td width=\"57\">Le Kremlin Bic\u00eatre<\/td>\n<td width=\"85\"><span style=\"color: #e3158a;\">Centre de R\u00e9f\u00e9rence des Leucodystrophies \u00e0 Bic\u00eatre<\/span><span style=\"color: #e3158a;\"> (coordinating center)<\/span><\/td>\n<td width=\"227\">All leukodystrophies, and particularly adrenoleukodystrophy (ALD), adrenomyeloneuropathy (AMN), Metachromatic leukodystrophy (MLD), Krabbe disease (GLD) and Canavan disease<\/td>\n<td width=\"47\"><a href=\"http:\/\/elainternational.eu\/centre-de-reference-des-leucodystrophies-a-bicetre\/\"><em><span style=\"color: #e3158a;\"><span style=\"text-decoration: underline;\">Center details<\/span><\/span><\/em><\/a><\/td>\n<\/tr>\n<tr>\n<td width=\"48\"><strong><span style=\"color: #e3158a;\">France<\/span><\/strong><\/td>\n<td width=\"57\">Paris<\/td>\n<td width=\"85\"><span style=\"color: #e3158a;\">Centre de R\u00e9f\u00e9rence des Leucodystrophies \u00e0 Robert-Debr\u00e9<\/span><\/td>\n<td width=\"227\">Pelizaeus-Merzbacher disease (PMD), hypomyelinating <span style=\"font-family: inherit; font-size: inherit;\">leukodystrophies<\/span>,\u00a0 CACH syndrome, leucodystrophie m\u00e9galenc\u00e9phalique kystique (MLC), Alexander disease and cavitating <span style=\"font-family: inherit; font-size: inherit;\">leukodystrophies<\/span>, Aicardi-Gouti\u00e8res syndrome, vascular <span style=\"font-family: inherit; font-size: inherit;\">leukodystrophies, lamine B and dominant<\/span><span style=\"font-family: inherit; font-size: inherit;\"> leukodystrophies<\/span><\/td>\n<td width=\"47\"><em><span style=\"color: #e3158a;\"><a href=\"http:\/\/elainternational.eu\/centre-de-reference-des-leucodystrophies-a-robert-debre\/\" target=\"_blank\" rel=\"noopener\"><span style=\"text-decoration: underline;\">Center details<\/span><\/a><\/span><\/em><\/td>\n<\/tr>\n<tr>\n<td width=\"48\"><span style=\"color: #e3158a;\"><strong>France<\/strong><\/span><\/td>\n<td width=\"57\">Paris<\/td>\n<td width=\"85\"><span style=\"color: #e3158a;\">Centre de R\u00e9f\u00e9rence des Maladies Neurog\u00e9n\u00e9tiques de l&#8217;Enfant et de l&#8217;Adulte<\/span><\/td>\n<td width=\"227\">Pelizaeus-Merzbacher disease (PMD), hypomyelinating <span style=\"font-family: inherit; font-size: inherit;\">leukodystrophies<\/span>,\u00a0 CACH syndrome, leucodystrophie m\u00e9galenc\u00e9phalique kystique (MLC), Alexander disease and cavitating <span style=\"font-family: inherit; font-size: inherit;\">leukodystrophies<\/span>, Aicardi-Gouti\u00e8res syndrome<\/td>\n<td width=\"47\"><a href=\"http:\/\/elainternational.eu\/centre-de-reference-des-maladies-neurogenetiques-de-lenfant-et-de-ladulte\/\"><span style=\"text-decoration: underline;\"><em><span style=\"color: #e3158a; text-decoration: underline;\">Center details<\/span><\/em><\/span><\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<p>&nbsp;<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>The centers of expertise: The reference centres are entities labeled by the Ministry of Health, bringing together highly specialised medical and paramedical skills for comprehensive management of rare diseases as perthe patient&#8217;s needs. Their missions: Define a strategy for therapeutic, psychological and social support Ensure the information and training of<span class=\"more-link\"><a href=\"https:\/\/old.elainternational.eu\/en\/les-centres-experts\/\">Read More &rarr;<\/a><\/span><\/p>\n","protected":false},"author":1,"featured_media":296,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"disable_featured_image":false,"footnotes":""},"rttpg_featured_image_url":{"full":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"landscape":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"portraits":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"thumbnail":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32-150x150.png",150,150,true],"medium":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"large":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"1536x1536":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"2048x2048":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"hoot-medium-thumb":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"hoot-preview":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"hoot-large-thumb":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"hoot-preview-large":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"hoot-wide":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false],"hoot-extra-wide":["https:\/\/old.elainternational.eu\/wp-content\/uploads\/2019\/01\/image-32.png",200,200,false]},"rttpg_author":{"display_name":"phonemELAint_19526","author_link":"https:\/\/old.elainternational.eu\/en\/author\/phonemelaint_19526\/"},"rttpg_comment":0,"rttpg_category":null,"rttpg_excerpt":"The centers of expertise: The reference centres are entities labeled by the Ministry of Health, bringing together highly specialised medical and paramedical skills for comprehensive management of rare diseases as perthe patient&#8217;s needs. Their missions: Define a strategy for therapeutic, psychological and social support Ensure the information and training ofRead More &rarr;","_links":{"self":[{"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/pages\/220"}],"collection":[{"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/comments?post=220"}],"version-history":[{"count":19,"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/pages\/220\/revisions"}],"predecessor-version":[{"id":5281,"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/pages\/220\/revisions\/5281"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/media\/296"}],"wp:attachment":[{"href":"https:\/\/old.elainternational.eu\/en\/wp-json\/wp\/v2\/media?parent=220"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}