{"id":83,"date":"2018-03-19T15:55:45","date_gmt":"2018-03-19T14:55:45","guid":{"rendered":"http:\/\/ela-asso.lu\/?page_id=83"},"modified":"2026-10-17T21:24:24","modified_gmt":"2026-10-17T19:24:24","slug":"les-centres-experts","status":"publish","type":"page","link":"https:\/\/ela-asso.lu\/en\/les-centres-experts\/","title":{"rendered":"Expert centres"},"content":{"rendered":"<div class=\"entry-content\">\n<div class=\"entry-the-content\">\n<p>Reference centres are bodies accredited by the French Ministry of Health that bring together highly specialised medical and paramedical expertise to provide comprehensive care for rare diseases as close as possible to the patient\u2019s needs.<\/p>\n<h2><span style=\"color: #e41871;\">Their missions<\/span><\/h2>\n<ul>\n<li>Improve access to diagnosis and to the announcement of the diagnosis<\/li>\n<li>Define a strategy for therapeutic, psychological and social support care<\/li>\n<li>Ensure that patients and their families are informed and trained<\/li>\n<li>Guide and coordinate the non-specialist healthcare professionals involved in the patient\u2019s local care, informing and training them about the disease and its management<\/li>\n<li>Take part in the epidemiological surveillance of the disease, and in promoting and running research and clinical trials<\/li>\n<li>Take part in establishing good professional practice for the disease, in liaison with national and international teams working in the same field<\/li>\n<li>Take part in the dissemination and follow-up of orphan therapies and devices<\/li>\n<li>Commit to a dynamic of coordination between centres that care for the same group of conditions<\/li>\n<li>Act as the point of contact for administrative authorities and patient associations to improve the care and quality of life of patients and their families.<\/li>\n<\/ul>\n<h3><span style=\"color: #e41871;\">Reference Centre for Leukodystrophies at Bic\u00eatre<\/span><\/h3>\n<p>Leukodystrophies covered: All leukodystrophies and in particular adrenoleukodystrophy (ALD), adrenomyeloneuropathy (AMN), metachromatic leukodystrophy (MLD), Krabbe disease (GLD) and Canavan disease.<\/p>\n<p>Bic\u00eatre Hospital Paris Sud<br \/>\nPaediatric Neurology and Endocrinology Departments<br \/>\n78, rue du G\u00e9n\u00e9ral Leclerc<br \/>\n94275 Le Kremlin Bic\u00eatre, France<\/p>\n<p><span style=\"color: #e41871;\">Medical secretariat:<\/span> +33 (0)1 45 21 31 12<\/p>\n<h3><span style=\"color: #e41871;\">Reference Centre for Leukodystrophies at Robert-Debr\u00e9<\/span><\/h3>\n<p>Leukodystrophies covered: All leukodystrophies and in particular Pelizaeus-Merzbacher disease (PMD), hypomyelinating leukodystrophies, CACH syndrome, megalencephalic leukoencephalopathy with subcortical cysts (MLC), Alexander disease and cavitating leukodystrophies, Aicardi-Gouti\u00e8res syndrome, vascular leukodystrophies, lamin B and dominant leukodystrophies.<\/p>\n<p>Robert-Debr\u00e9 Hospital<br \/>\nGroupement Hospitalier Universitaire Nord<br \/>\n48, boulevard S\u00e9rurier<br \/>\n75019 Paris, France<\/p>\n<p><span style=\"color: #e41871;\">Telephone contact:<\/span><br \/>\nMonday, Tuesday, Wednesday (8am\u20138pm) : +33 (0)1 40 03 40 20<br \/>\nThursday to Sunday inclusive : +33 (0)4 73 71 53 05<br \/>\n<span style=\"color: #e41871;\">HOTLINE:<\/span> +33 (0)6 31 73 93 52<br \/>\nFax: +33 (0)1 40 03 47 74<br \/>\nE-mail: marie-louise.vendeville@rdb.aphp.fr<\/p>\n<h3><span style=\"color: #e41871;\">Reference Centre for Neurogenetic Diseases of Children and Adults<\/span><\/h3>\n<p><span style=\"color: #e41871;\"><strong>Coordinator<\/strong><\/span><br \/>\nProf. Alexis Brice<\/p>\n<p><span style=\"color: #e41871;\"><strong>Diseases covered<br \/>\n<\/strong><\/span>All leukodystrophies and in particular Pelizaeus-Merzbacher disease, hypomyelinating leukodystrophies, CACH syndrome, megalencephalic leukoencephalopathy with subcortical cysts (MLC), Alexander disease and cavitating leukodystrophies, Aicardi-Gouti\u00e8res syndrome.<\/p>\n<p><span style=\"color: #e41871;\"><strong>Paediatric neurologist<br \/>\n<\/strong><\/span>Prof. Diana Rodriguez<\/p>\n<p><strong><span style=\"color: #e41871;\">Geneticist<\/span><br \/>\n<\/strong>Dr Lydie Burglen<\/p>\n<p><span style=\"color: #e41871;\"><strong>Contact details<\/strong><\/span><br \/>\nArmand Trousseau Hospital<br \/>\nDepartment of Paediatric Neurology<br \/>\nDevelopmental Pathology<br \/>\n26, avenue du Docteur Arnold Netter<br \/>\n75012 Paris, France<br \/>\nTel: +33 (0)1 44 73 61 41<\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Reference centres are bodies accredited by the French Ministry of Health that bring together highly specialised medical and paramedical expertise to provide comprehensive care for rare diseases as close as possible to the patient\u2019s needs. Their missions Improve access to diagnosis and to the announcement of the diagnosis Define a<span class=\"more-link\"><a href=\"https:\/\/ela-asso.lu\/en\/les-centres-experts\/\">Read More &rarr;<\/a><\/span><\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"two_page_speed":[],"footnotes":""},"class_list":["entry","author-ela-luxembourg","post-83","page","type-page","status-publish"],"_links":{"self":[{"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/pages\/83","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/comments?post=83"}],"version-history":[{"count":9,"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/pages\/83\/revisions"}],"predecessor-version":[{"id":2711,"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/pages\/83\/revisions\/2711"}],"wp:attachment":[{"href":"https:\/\/ela-asso.lu\/en\/wp-json\/wp\/v2\/media?parent=83"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}