{"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":"2020-12-18T14:47:22","modified_gmt":"2020-12-18T13:47:22","slug":"les-centres-experts","status":"publish","type":"page","link":"https:\/\/ela-asso.lu\/lu\/les-centres-experts\/","title":{"rendered":"Experten Zentren"},"content":{"rendered":"<div class=\"entry-content\">\n<div class=\"entry-the-content\">\n<p>Referenz Zentren sinn Entit\u00e9iten d\u00e9i vum Gesondheetsminist\u00e8re unerkannt sinn. Si versammelen all d\u2019Kompetenzen fir eng global Prise-en-charge vun der Krankheet ze maachen.<\/p>\n<h2><span style=\"color: #e41871;\">Hir Missiounen<\/span><\/h2>\n<ul>\n<li>Besseren Zougang zu enger Diagnose an d\u2019Uk\u00ebnnegung<\/li>\n<li>Eng Strategie erausschaffen fir eng therapeutesch, psychesch a sozial \u00cbnnerst\u00ebtzung<\/li>\n<li>D&#8217;Informatioun an d&#8217;Ausbildung vun dem Patient a senger Famill garant\u00e9ieren<\/li>\n<li>Guide a Koordinatioun, Training an Management vun net spezialis\u00e9iert Gesondheetsprofessionneller d\u00e9i mat der Pfleeg vun de Patienten betreit ginn<\/li>\n<li>D\u00e9i epidemiologesch Iwwerwaachung vun der Krankheet, d\u2019Promotioun an d\u2019Animatioun vun der Recherche an den therapeutesche Prozesser<\/li>\n<li>Mataarbechter vu gudde professionnelle Praktiken iwwer d&#8217;Krankheet an der Verbindung mam nationale an internationalen Ver\u00e4iner ze schaffen an deemselwechte Ber\u00e4ich<\/li>\n<li>Un der Verbreedung an Iwwerwaachung vun Orphan Therapien an Apparater<\/li>\n<li>Engag\u00e9iert d&#8217;Koordinatiounsdynamik t\u00ebschent Zentren, d\u00e9i d&#8217;selwescht Grupp vu Pathologien \u00ebnnerst\u00ebtzen<\/li>\n<li>Interlocutioun vun de Verwaltungen an d&#8217;Vereenegungen vun den Patienten ze schaffen fir d&#8217;Verbesserung vun der Pfleeg an der Liewensqualit\u00e9it vum Patient an seng Famill ze schaffen.<\/li>\n<\/ul>\n<h3><span style=\"color: #e41871;\">Leucodystrophies Referenz Center H\u00f4pital Am Bic\u00eatre Paris<\/span><\/h3>\n<p>Betraffen Leukodystrophien: all d\u2019Leukodystrophien a besonnesch adrenoleukodystrophy (ALD), Adrenomyeloneuropathy (AMN), metachromatic leukodystrophy (MLD), Krabbe Krankheet (GLD) an Krankheet Canavan.<\/p>\n<p>H\u00f4pital Hospital Paris Sud<br \/>\nServices de Neurologie et d\u2019Endocrinologie P\u00e9diatriques<br \/>\n78, rue du G\u00e9n\u00e9ral Leclerc<br \/>\n94275 Le Kremlin Bic\u00eatre, Frankr\u00e4ich<\/p>\n<p><span style=\"color: #e41871;\">Sekretariat: <\/span>\u00a0+33 (0)1 45 21 31 12<\/p>\n<h3><span style=\"color: #e41871;\">Leucodystrophie Referenz Center H\u00f4pital Robert-Debr\u00e9 Paris<\/span><\/h3>\n<p>Betraffe Leukodystrophien: all d\u2019Leukodystrophien a besonnesch Pelizaeus-Merzbacher Krankheet , hypomy\u00e9linisantes leukodystrophies, CACH Syndrom, fir mech leukodystrophy megalencephalic (MLC), Alexander Krankheet an cavitary leukodystrophy, MILLE k\u00e4mpfen-Gouti\u00e8res, wiere leukodystrophies, lamin B an leukodystrophies dominantes.<\/p>\n<p>H\u00f4pital Robert-Debr\u00e9<br \/>\nGroupement Hospitalier Universitaire Nord<br \/>\n48, boulevard S\u00e9rurier<br \/>\n75019 Paris, France<\/p>\n<p><span style=\"color: #e41871;\">Telefonskontakt:<\/span><br \/>\nDonneschdes bis Sonndesowes: 04 73 71 53 05<br \/>\n<span style=\"color: #e41871;\">HOTLINE:<\/span> 06 31 73 93 52<br \/>\nFax: 01 40 03 47 74<br \/>\nE-Mail: marie- louise.vendeville@rdb.aphp.fr<\/p>\n<h3><span style=\"color: #e41871;\">Referenz Center fir Neurogenetesch Krankheete vu Kanner a Erwuessenen<\/span><\/h3>\n<p><span style=\"color: #e41871;\"><strong>Koordinator<\/strong><\/span><br \/>\nPr Alexis Brice<\/p>\n<p><span style=\"color: #e41871;\"><strong>Betraffe Krankheeten<br \/>\n<\/strong><\/span>All d\u2019Leukodystrophien a besonnesch Pelizaeus-Merzbacher hypomy\u00e9linisantes leukodystrophies, CACH Symptom, leukodystrophy megalencephalic (MLC), Alexander Krankheet an cavitary leukodystrophy.<\/p>\n<p><span style=\"color: #e41871;\"><strong>Neurop\u00e9diatre<br \/>\n<\/strong><\/span>Pr Diana Rodriguez<\/p>\n<p><strong><span style=\"color: #e41871;\">G\u00e9n\u00e9ticienne<\/span><br \/>\n<\/strong>Dr Lydie Burglen<\/p>\n<p><span style=\"color: #e41871;\"><strong>Coordonn\u00e9es<\/strong><\/span><br \/>\nH\u00f4pital Armand Trousseau<br \/>\nService de Neurop\u00e9diatrie<br \/>\nPathologie du D\u00e9veloppement<br \/>\n26, avenue du Docteur Arnold Netter<br \/>\n75012 Paris, France<br \/>\nT\u00e9l : +33 (0)1 44 73 61 41<\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Referenz Zentren sinn Entit\u00e9iten d\u00e9i vum Gesondheetsminist\u00e8re unerkannt sinn. Si versammelen all d\u2019Kompetenzen fir eng global Prise-en-charge vun der Krankheet ze maachen. Hir Missiounen Besseren Zougang zu enger Diagnose an d\u2019Uk\u00ebnnegung Eng Strategie erausschaffen fir eng therapeutesch, psychesch a sozial \u00cbnnerst\u00ebtzung D&#8217;Informatioun an d&#8217;Ausbildung vun dem Patient a senger Famill<span class=\"more-link\"><a href=\"https:\/\/ela-asso.lu\/lu\/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":[]},"_links":{"self":[{"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/pages\/83"}],"collection":[{"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/comments?post=83"}],"version-history":[{"count":8,"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/pages\/83\/revisions"}],"predecessor-version":[{"id":824,"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/pages\/83\/revisions\/824"}],"wp:attachment":[{"href":"https:\/\/ela-asso.lu\/lu\/wp-json\/wp\/v2\/media?parent=83"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}