{"id":597,"date":"2022-06-28T16:59:24","date_gmt":"2022-06-28T14:59:24","guid":{"rendered":"https:\/\/www.afaf.asso.fr\/?page_id=597"},"modified":"2025-12-15T14:23:57","modified_gmt":"2025-12-15T13:23:57","slug":"prise-en-charge-medicale","status":"publish","type":"page","link":"https:\/\/www.afaf.asso.fr\/la-maladie\/prise-en-charge-medicale\/","title":{"rendered":"Prise en charge m\u00e9dicale"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"597\" class=\"elementor elementor-597\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6338cd8 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6338cd8\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-4678a0c\" data-id=\"4678a0c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-ee40a8b elementor-widget elementor-widget-text-editor\" data-id=\"ee40a8b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong>La recherche dans l\u2019Ataxie de Friedreich progresse \u00e0 grands pas.<\/strong> Si le traitement curatif n\u2019existe pas encore, <strong>le nombre croissant d&#8217;essais cliniques<\/strong> montre que des mol\u00e9cules sont tr\u00e8s proches pour d\u00e9j\u00e0 en ralentir l&#8217;\u00e9volution. <strong>L&#8217;\u00e9volution de chacun est diff\u00e9rente, tant dans sa rapidit\u00e9 que dans ses complications.<\/strong> C&#8217;est pourquoi <b>une prise en charge m\u00e9dicale et param\u00e9dicale multidisciplinaire <\/b>est primordiale d\u00e8s le d\u00e9but de la maladie pour retarder l\u2019\u00e9volution et l\u2019apparition de complications, et am\u00e9liorer ainsi la qualit\u00e9 et l\u2019esp\u00e9rance de vie des personnes ataxiques.<\/p><p>Comme pour toute maladie rare, une fili\u00e8re, <a class=\"nouvelle-fenetre\" href=\"http:\/\/brain-team.fr\" target=\"_blank\" rel=\"noopener\"><strong>Brain Team<\/strong><\/a>, et des centres de comp\u00e9tences et de r\u00e9f\u00e9rences existent. <b>L\u2019AFAF met \u00e0 disposition de nombreuses informations<\/b> pour les soignants comme pour les patients et familles.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fcd6425 lien-ancre elementor-widget elementor-widget-text-editor\" data-id=\"fcd6425\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul>\n \t<li><a href=\"#le-suivi-medical\">Le suivi m\u00e9dical<\/a><\/li>\n \t<li><a href=\"#organisation-filiere-maladies-rares\">La fili\u00e8re maladies rares<\/a><\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-23ce383 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"23ce383\" data-element_type=\"section\" data-e-type=\"section\" id=\"le-suivi-medical\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2dfd7c1\" data-id=\"2dfd7c1\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-f81f27a elementor-widget elementor-widget-heading\" data-id=\"f81f27a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Le suivi m\u00e9dical<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a973d90 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"a973d90\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-2e2da2b elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2e2da2b\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-ff175ab\" data-id=\"ff175ab\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-d2a5442 elementor-widget elementor-widget-image\" data-id=\"d2a5442\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-1024x683.jpg\" class=\"attachment-large size-large wp-image-598\" alt=\"\" srcset=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-1024x683.jpg 1024w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-scaled-e1656424490605-600x400.jpg 600w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-scaled-e1656424490605-300x200.jpg 300w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-768x512.jpg 768w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-1536x1024.jpg 1536w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-2048x1365.jpg 2048w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-scaled-e1656424490605.jpg 700w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-2453490\" data-id=\"2453490\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-59c023a elementor-widget elementor-widget-text-editor\" data-id=\"59c023a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Pluridisciplinaire, il a pour objectif de <b>pr\u00e9server l&#8217;autonomie, les capacit\u00e9s fonctionnelles et de pr\u00e9venir ou traiter les r\u00e9percussions.<br \/>Votre m\u00e9decin g\u00e9n\u00e9raliste, le neurologue, le m\u00e9decin de r\u00e9adaptation, le cardiologue, l&#8217;orthop\u00e9diste sont les pivots de votre suivi dans l\u2019ataxie de Friedreich.<\/b> Ils doivent travailler en \u00e9troite collaboration, et sont aussi le relais de vos besoins aupr\u00e8s des autres soignants, m\u00e9decins sp\u00e9cialistes et param\u00e9dicaux.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-f90e874 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"f90e874\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-e13567d\" data-id=\"e13567d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-8a2c49d elementor-widget elementor-widget-heading\" data-id=\"8a2c49d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Les diff\u00e9rents acteurs<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e37577d elementor-widget elementor-widget-text-editor\" data-id=\"e37577d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul><li><b>Vous-m\u00eame et vos proches<\/b> : vous \u00eates au c\u0153ur du dispositif de soins !<\/li><li>Votre\u00a0<b>m\u00e9decin g\u00e9n\u00e9raliste r\u00e9f\u00e9rent<\/b> est fondamental. C\u2019est le m\u00e9decin \u00ab de premier recours \u00bb d\u00e8s qu\u2019un probl\u00e8me urgent se pose \u00e0 vous.<b> Il doit \u00eatre inform\u00e9 de vos diff\u00e9rents suivis<\/b>, en lien avec les sp\u00e9cialistes, en particulier avec votre neurologue, cardiologue, etc.<\/li><li>Les m\u00e9decins\u00a0<b>sp\u00e9cialistes<\/b> : <b>neurologue<\/b> adulte ou enfant, <b>g\u00e9n\u00e9ticien<\/b>, <b>cardiologue<\/b>, <b>orthop\u00e9diste<\/b>, <b>m\u00e9decin de r\u00e9adaptation<\/b>,\u00a0 pneumologue, urologue, diab\u00e9tologue, etc, selon vos besoins.<\/li><li><b>Le Centre de R\u00e9f\u00e9rence des Maladies Neurog\u00e9n\u00e9tiques, NEUROGENE<\/b>:\u00a0 il rassemble des \u00e9quipes expertes dans l&#8217;ataxie de Friedreich, et met en place des <b>r\u00e9seaux de soins et de recherche <\/b>avec\u00a0 les Centres Constitutifs et des Centres de Comp\u00e9tence. Il organise des <b>consultations pluridisciplinaires<\/b> quand c&#8217;est possible. Il \u00e9labore des <b>r\u00e9f\u00e9rentiels de prise en charge, dont le PNDS<\/b> (Protocole National de Diagnostic et de Soins) \u00e0 destination des professionnels de sant\u00e9, pour une meilleure prise en charge. Vos professionnels de proximit\u00e9 peuvent les joindre pour avoir des conseils.<\/li><li>Les\u00a0<b>consultations pluridisciplinaires<\/b> :\u00a0 leur but est de faire le bilan sur les diff\u00e9rents aspects de votre v\u00e9cu dans la maladie et de r\u00e9ajuster votre prise en charge. Elles font intervenir des m\u00e9decins sp\u00e9cialistes, des professionnels param\u00e9dicaux (kin\u00e9sith\u00e9rapeute, orthophoniste, ergoth\u00e9rapeute, psychologue) et sociaux (assistante sociale).<\/li><li><b>Les centres de r\u00e9adaptation fonctionnelle <\/b>: \u00a0ils permettent de faire le point, de travailler diff\u00e9rents aspects de la maladie, et d&#8217;adapter vos besoins dans leur globalit\u00e9 , soit lors d&#8217;une hospitalisation de jour dans un service de r\u00e9adaptation, soit lors d&#8217;un s\u00e9jour (3 \u00e0 4 semaines) dans un centre. Le m\u00e9decin responsable est un m\u00e9decin de <b>M\u00e9decine Physique et R\u00e9adaptation (MPR)<\/b>.<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f37819a elementor-widget elementor-widget-heading\" data-id=\"f37819a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Les grands axes de suivi\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d65b7ca elementor-widget elementor-widget-text-editor\" data-id=\"d65b7ca\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul>\n \t<li><b>Suivi neurologique<\/b> pour axer et adapter les diverses prises en charge : marche, spasticit\u00e9, dysarthrie, etc.<\/li>\n \t<li><b>Suivi cardiaque :<\/b>\n<ul>\n \t<li aria-level=\"2\"><b>Bilan cardiaque initial syst\u00e9matique<\/b> avec examen ECG, Holter, \u00e9chographie et si besoin IRM cardiaque, puis <b>suivi annuel<\/b>.<\/li>\n \t<li aria-level=\"2\">Si suivi cardiaque en Centre de R\u00e9f\u00e9rence, il est tr\u00e8s important d&#8217;avoir aussi un cardiologue de proximit\u00e9 qui soit au courant du suivi en centre de r\u00e9f\u00e9rence, et en cas d&#8217;urgence.<\/li>\n \t<li aria-level=\"2\"><b>Important: ayez un ECG de r\u00e9f\u00e9rence sur vous.<\/b> Il existe des petites anomalies sur l&#8217;ECG dues \u00e0 l&#8217;ataxie de Friedreich, sans grandes cons\u00e9quences si elles sont stables. En cas de malaise l\u00e9ger (chaleur, hypoglyc\u00e9mie, &#8230;) si vous allez aux urgences, elles peuvent faire suspecter un d\u00e9but d&#8217;infarctus et entra\u00eenent alors des examens et hospitalisations souvent inutiles si vous disposez d&#8217;un ECG de r\u00e9f\u00e9rence.<\/li>\n<\/ul>\n<\/li>\n \t<li><b>Suivi orthop\u00e9dique <\/b>: <b>scoliose<\/b> \u00e0 surveiller surtout chez les adolescents, <b>d\u00e9formations des pieds et chevilles <\/b>(pieds creux, varus \u00e9quin : pieds en appui sur l&#8217;ext\u00e9rieur)<\/li>\n \t<li><b>Bilan sanguin annuel <\/b>:\n<ul>\n \t<li>Glyc\u00e9mie et h\u00e9moglobine glyqu\u00e9e (Hbalc) \u00e0 surveiller<\/li>\n \t<li>Petite an\u00e9mie fr\u00e9quente (suppl\u00e9mentation en fer non contre-indiqu\u00e9e si la cause est bien identifi\u00e9e, ponctuelle selon le besoin (cf PNDS 3.3.3)<\/li>\n<\/ul>\n<\/li>\n \t<li><b>Suivi pneumologique \u00e9ventuel <\/b>: devant un sommeil non r\u00e9parateur et une grande fatigabilit\u00e9, penser aux <b>apn\u00e9es du sommeil fr\u00e9quentes<\/b>, et faire alors un enregistrement du sommeil pour appareiller si besoin la nuit.<\/li>\n \t<li><b>Autres suivis variables<\/b> selon les situations : ORL, ophtalmo, urologue, diab\u00e9tologue, grossesse, vaccins, anesth\u00e9sies, urgences &#8230;<\/li>\n<\/ul>\nLe rythme des visites doit <b>\u00eatre adapt\u00e9 <\/b>\u00e0 l&#8217;\u00e9volution de chacun.\n\n<b>Les diff\u00e9rents suivis sont d\u00e9taill\u00e9s dans le 1er PNDS <\/b>(Protocole National de Diagnostic et de Soins), r\u00e9f\u00e9rentiel \u00e0 destination des soignants. Vous y trouverez aussi un document sp\u00e9cifique \u00e0 destination de votre m\u00e9decin traitant, une fiche d&#8217;urgence et des fiches pratiques de suivi pour les diff\u00e9rents sp\u00e9cialistes et param\u00e9dicaux.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2bf0536 elementor-widget elementor-widget-heading\" data-id=\"2bf0536\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Prise en charge m\u00e9dicamenteuse\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2e99f82 elementor-widget elementor-widget-text-editor\" data-id=\"2e99f82\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul><li><b>Traitements symptomatiques<\/b> selon les r\u00e9percussions variables d&#8217;une personne \u00e0 l&#8217;autre (neurologiques, cardiaques, ost\u00e9oarticulaires, respiratoires, diab\u00e9tiques &#8230;)<\/li><li><b>Traitement de fond <\/b>: l&#8217;Idebenone (Amizal), anti-oxydant, est discut\u00e9. Si des \u00e9tudes ont montr\u00e9 des r\u00e9sultats encourageants, notamment au niveau cardiaque, il n&#8217;y a pas eu d&#8217;effet positif attendu suffisant lors des essais. Cependant certains patients semblent plus r\u00e9pondeurs que d&#8217;autres \u00e0 cette mol\u00e9cule. En l&#8217;absence actuelle d&#8217;alternative th\u00e9rapeutique et d&#8217;effets toxiques, l&#8217;idebenone peut \u00eatre prescrite dans les CHU du r\u00e9seau des centres de r\u00e9f\u00e9rence dans le cadre de prescriptions compassionnelles.<\/li><li><b>Traitement curatif <\/b>: il n&#8217;existe pas encore mais des essais cliniques devraient aboutir \u00e0 2 ou 3 mol\u00e9cules fin 2023 ou en 2024, ralentissant d\u00e9j\u00e0 l&#8217;\u00e9volution de la maladie. D&#8217;autres essais th\u00e9rapeutiques ont \u00e9galement d\u00e9but\u00e9.<\/li><li>Voir \u00e9galement le PNDS chapitre 3.3 page 24<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3c6afaf elementor-position-inline-start elementor-view-default elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"3c6afaf\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-info-circle\"><\/i>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tNe pas oublier :\n<ul>\n \t<li><b>Pr\u00e9parez vos consultations<\/b>. \u00c9crivez ou faites \u00e9crire les diff\u00e9rentes questions qui vous pr\u00e9occupent et que vous souhaitez poser afin de pouvoir toutes les aborder avec votre m\u00e9decin.<\/li>\n \t<li>Transmettez le <b><a href=\"https:\/\/www.afaf.asso.fr\/la-maladie\/pour-les-soignants\"> Protocole National de Diagnostic et de soin (PNDS)<\/a><\/b> \u00e0 vos soignants.<\/li>\n \t<li>Des<b> <a href=\"https:\/\/www.afaf.asso.fr\/la-maladie\/pour-les-soignants\/\"> lettres d\u2019informations <\/a>ont \u00e9t\u00e9 r\u00e9dig\u00e9es par notre Conseil m\u00e9dical et param\u00e9dical <\/b> pour aider \u00e0 une meilleure prise en charge. Elles sont destin\u00e9es \u00e0 vos soignants, n\u2019h\u00e9sitez pas \u00e0 leur en parler (lien vers section soignants)<\/li>\n<\/ul>\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-c5e0af3\" data-id=\"c5e0af3\" data-element_type=\"column\" data-e-type=\"column\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-d6d8bd1 elementor-widget elementor-widget-text-editor\" data-id=\"d6d8bd1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<strong>Pour les soignants<\/strong>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c78759e elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"c78759e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-75f7196 liens2-colonne-laterale elementor-widget elementor-widget-text-editor\" data-id=\"75f7196\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul><li>Retrouvez directement le PNDS , les newsletters et les articles sp\u00e9cifiques sur la page <a href=\"https:\/\/www.afaf.asso.fr\/la-maladie\/pour-les-soignants\/\">Pour les soignants<\/a>.<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c69e905 elementor-widget elementor-widget-text-editor\" data-id=\"c69e905\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong>Documents associ\u00e9s<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6b049c0 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"6b049c0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-bc7f617 liens2-colonne-laterale elementor-widget elementor-widget-text-editor\" data-id=\"bc7f617\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul>\n \t<li class=\"nouvelle-fenetre\">Parlez \u00e0 vos m\u00e9decins du <a href=\"https:\/\/www.afaf.asso.fr\/la-maladie\/pour-les-soignants\/#protocole-national-diagnostic-et-soins\" target=\"_blank\" rel=\"noopener\">Protocole National de Diagnostic et de Soins (PNDS) dans l\u2019Ataxie de Friedreich<\/a>.<\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/la-maladie\/pour-les-soignants\" rel=\"noopener\">L\u2019AFAF publie des newletters pour les soignants<\/a> &#8211; cardiologie, probl\u00e8mes respiratoires, douleurs, spasticit\u00e9, troubles urinaires, grossesse, test g\u00e9n\u00e9tique, suivi psychologique\u2026<\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-487686b pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"487686b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<strong>Idebenone (Mnesis \u2013 Amizal)<\/strong>\n<ul>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Prolongation-des-prescriptions-du-Mnesis-par-ATU.pdf\" target=\"_blank\" rel=\"noopener\"> Prolongation des prescriptions du Mnesis par ATU \u2013 D\u00e9c. 2015<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Ide\u0301be\u0301none-Mnesis-ou\u0300-en-sommes-nous-.pdf\" target=\"_blank\" rel=\"noopener\">Id\u00e9b\u00e9none, Mnesis, o\u00f9 en sommes nous ? D\u00e9cembre 2015 \u2013 P Rustin (Espoir 142)<\/a><\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ce7fa92 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"ce7fa92\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<strong>MPR et r\u00e9\u00e9ducation<\/strong>\n<ul>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Prise-en-charge-me\u0301dicale-des-ataxies-vu-sous-langle-de-la-MPR-\u2013-D.-Mazevet.pdf\" target=\"_blank\" rel=\"noopener\">Prise en charge m\u00e9dicale des ataxies vu sous l\u2019angle de la MPR \u2013 D. Mazevet \u2013 2010<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/La-re\u0301e\u0301ducation-dans-lataxie-de-Friedreich-\u2013-V.-Tiffreau.pdf\" target=\"_blank\" rel=\"noopener\">La r\u00e9\u00e9ducation dans l\u2019ataxie de Friedreich \u2013 V. Tiffreau \u2013 2011<\/a><\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1942e6f pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"1942e6f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<strong>Autres documents de prise en charge<\/strong>\n<ul>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP145_La-scoliose-dans-lataxie-de-Friedreich_Equipe-Dr-Husson_Avril-2016-Espoir-145.pdf\" target=\"_blank\" rel=\"noopener\"> La scoliose dans l\u2019ataxie de Friedreich_Equipe Dr Husson_Avril 2016 (Espoir 145)<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP145_Les-troubles-urinaires-dans-lAF_Equipe-Dr-Husson_Avril-2016-Espoir-145.pdf\" target=\"_blank\" rel=\"noopener\"> Les troubles urinaires dans l\u2019AF_Equipe Dr Husson_Avril 2016 (Espoir 145)<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP142_Inte\u0301re\u0302t-de-la-prise-en-charge-pre\u0301coce-de-lAF_Equipe-Robert-Debre\u0301_De\u0301cembre-2015-Espoir-142.d.pdf\" target=\"_blank\" rel=\"noopener\">Int\u00e9r\u00eat de la prise en charge pr\u00e9coce de l\u2019AF_Equipe Robert Debr\u00e9_D\u00e9cembre 2015 (Espoir 142)<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Inte\u0301re\u0302t-de-la-prise-en-charge-pre\u0301coce-de-lataxie-de-Friedreich-Equipe-Robert-Debre\u0301.pdf\" target=\"_blank\" rel=\"noopener\">Int\u00e9r\u00eat de la prise en charge pr\u00e9coce de l\u2019ataxie de Friedreich \u2013 Equipe Robert Debr\u00e9 \u2013 2015<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/De\u0301formations-des-pieds-et-AF.pdf\" target=\"_blank\" rel=\"noopener\">D\u00e9formations des pieds dans l\u2019Ataxie de Friedreich \u2013 2005<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/De\u0301formations-du-rachis-dans-lAtaxie-de-Friedreich.pdf\" target=\"_blank\" rel=\"noopener\">D\u00e9formations du rachis dans l\u2019Ataxie de Friedreich \u2013 2004<\/a><\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0f3d1bc pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"0f3d1bc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<strong>S\u00e9jours de r\u00e9adaptation et r\u00e9pit<\/strong>\n<ul>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP167_Lieux-de-repit-vacances.pdf\" target=\"_blank\" rel=\"noopener\"> Lieux de r\u00e9pit et de vacances_Avril 2022 (Espoir 167)<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP157_PAMPERO-Le-1er-programme-de-recherche-en-re\u0301adaptation_G.Rode_Mai-2019-Espoir-157.pdf\" target=\"_blank\" rel=\"noopener\">PAMPERO : Le 1er programme de recherche en r\u00e9adaptation_G.Rode_Mai 2019 (Espoir 157)<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP149_Se\u0301jour-de-re\u0301adaptation-a\u0300-lHo\u0302pital-Marin-de-Hendaye_Dr-B.Soudrie-et-son-e\u0301quipe_Avril-2017-Espoir-149.pdf\" target=\"_blank\" rel=\"noopener\">S\u00e9jour de r\u00e9adaptation \u00e0 l\u2019H\u00f4pital Marin de Hendaye_Dr B.Soudrie et son \u00e9quipe_Avril 2017 (Espoir 149) <\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP146_Te\u0301moignages-nos-se\u0301jours-a\u0300-lho\u0302pital-marin-dHendaye_De\u0301borah-Christophe-Caroline-Lucie-Evelyne_Janvier-2017-Espoir-146.pdf\" target=\"_blank\" rel=\"noopener\">T\u00e9moignages \u2013 nos s\u00e9jours \u00e0 l\u2019h\u00f4pital marin d\u2019Hendaye_D\u00e9borah, Christophe, Caroline, Lucie, Evelyne_Janvier 2017 (Espoir 146)<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP144_Un-se\u0301jour-e\u0301ducatif-a\u0300-Hendaye_Dr-B-Soudrie-J-M-Giansanti_Avril-2016-Espoir-144.pdf\" target=\"_blank\" rel=\"noopener\">Un s\u00e9jour \u00e9ducatif \u00e0 Hendaye_Dr B Soudrie, J-M Giansanti_Avril 2016 (Espoir 144)<\/a><\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cc37cd9 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"cc37cd9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong>Accompagnement en fin de vie: les lois\u00a0<\/strong><\/p><ul><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Directives-anticipe\u0301es-et-personne-de-confiance_Avril-2014-Espoir-1371.pdf\" target=\"_blank\" rel=\"noopener\">Directives anticip\u00e9es et personnes de confiance &#8211; Avril 2014 (Espoir 137)<\/a><\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3bdd47a elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3bdd47a\" data-element_type=\"section\" data-e-type=\"section\" id=\"organisation-filiere-maladies-rares\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-07e05e0\" data-id=\"07e05e0\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-fe82b41 elementor-widget elementor-widget-heading\" data-id=\"fe82b41\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Organisation de la fili\u00e8re maladies rares<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-06b86a0 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"06b86a0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-bc3c4a1 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"bc3c4a1\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-f3b5a26\" data-id=\"f3b5a26\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-b961e84 elementor-widget elementor-widget-image\" data-id=\"b961e84\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-1024x683.jpg\" class=\"attachment-large size-large wp-image-598\" alt=\"\" srcset=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-1024x683.jpg 1024w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-scaled-e1656424490605-600x400.jpg 600w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-scaled-e1656424490605-300x200.jpg 300w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-768x512.jpg 768w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-1536x1024.jpg 1536w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-2048x1365.jpg 2048w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/06\/suivi-medical-scaled-e1656424490605.jpg 700w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-924ab2f\" data-id=\"924ab2f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-95cb2c9 nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"95cb2c9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>L\u2019Ataxie de Friedreich est une maladie rare.<br \/>En France nous en sommes au quatri\u00e8me plan national de maladies rares :<\/p><ul><li><a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/plan_national_maladies_rares_2005-2008.pdf\" target=\"_blank\" rel=\"noopener\">Premier plan 2005- 2008<\/a><\/li><li><a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/plan_national_maladies_rares_2011-2014.pdf\" target=\"_blank\" rel=\"noopener\">Deuxi\u00e8me plan 2011- 2014 prolong\u00e9 jusqu\u2019en 2016<\/a><\/li><li><a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/pnmr_3_v25-09pdf.pdf\" target=\"_blank\" rel=\"noopener\">Troisi\u00e8me plan 2018-2022<\/a><\/li><li><a href=\"https:\/\/sante.gouv.fr\/actualites-presse\/presse\/communiques-de-presse\/article\/des-territoires-vers-l-europe-le-gouvernement-lance-le-4e-plan-national\" target=\"_blank\" rel=\"noopener\">Quatri\u00e8me plan 2025-2030<\/a><\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<div class=\"elementor-element elementor-element-e3fea51 elementor-widget elementor-widget-text-editor\" data-id=\"e3fea51\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\tCes travaux ont permis de mettre en place un ensemble d\u2019actions permettant un meilleur accompagnement m\u00e9dical de ces maladies devant lesquelles souvent nous nous sentons d\u00e9munis quand nos soignants ne semblent pas bien les conna\u00eetre (7000 maladies rares).\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-8384b1c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"8384b1c\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-f6a4ea0\" data-id=\"f6a4ea0\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-c1f1de1 elementor-widget elementor-widget-heading\" data-id=\"c1f1de1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">S\u2019y retrouver dans les structures mises en place\u00a0:<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-8048569 elementor-widget elementor-widget-heading\" data-id=\"8048569\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">Au centre du dispositif : Les Centres de R\u00e9f\u00e9rence Maladies Rares (CRMR)<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-509dccd elementor-widget elementor-widget-text-editor\" data-id=\"509dccd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Les CRMR sont des centres hospitaliers organis\u00e9s autour d\u2019une \u00e9quipe pluriprofessionnelle et pluridisciplinaire hautement sp\u00e9cialis\u00e9e ayant une expertise av\u00e9r\u00e9e pour ces maladies dans les domaines des soins, de la recherche-formation.<\/p><p>Ils exercent une attractivit\u00e9 r\u00e9gionale, interr\u00e9gionale, nationale, voire internationale, en fonction de la raret\u00e9 de la maladie.<\/p><p>Cela avec un objectif : l\u2019\u00e9quit\u00e9 en termes d\u2019acc\u00e8s au diagnostic, au traitement et \u00e0 la prise en charge globale des personnes malades.<\/p><p>Les CRMR peuvent \u00eatre mono-sites (et ce site unique est \u00ab site coordonnateur \u00bb) ou multi-sites (comprenant un \u00ab site coordonnateur \u00bb et un ou plusieurs \u00ab sites constitutifs \u00bb).<\/p><p>Les sites constitutifs sont exclusivement limit\u00e9s \u00e0 la n\u00e9cessit\u00e9 d\u2019une compl\u00e9mentarit\u00e9 avec les activit\u00e9s du \u00ab site coordonnateur\u00bb.<\/p><p>Le centre de r\u00e9f\u00e9rence est expert dans les maladies rares pour lesquelles il est labellis\u00e9. A ce titre, il doit organiser l\u2019acc\u00e8s \u00e0 l\u2019information et exercer un r\u00f4le de conseil et d\u2019appui aupr\u00e8s de ses pairs, hospitaliers et de ville dans le secteur sanitaire, mais aussi \u00e9ducatif, m\u00e9dico-social et social.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-81b7336 elementor-widget elementor-widget-heading\" data-id=\"81b7336\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">Pour un maillage de proximit\u00e9: Les centres de Comp\u00e9tences Maladies Rares\n(CCMR)<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-dd7ebd6 elementor-widget elementor-widget-text-editor\" data-id=\"dd7ebd6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Les CCMR participent au diagnostic des maladies rares et mettent en \u0153uvre la th\u00e9rapeutique lorsqu\u2019elle est possible.<\/p><p>Ils organisent la prise en charge des patients en lien avec les CRMR auxquels ils sont rattach\u00e9s et avec l\u2019ensemble des acteurs de proximit\u00e9.<\/p><p>Les CCMR suivent les recommandations et les protocoles existants des CRMR auxquels ils sont rattach\u00e9s : pour cela, ils ont recours \u00e0 leur expertise en tant que de besoin.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-88f6270 elementor-widget elementor-widget-heading\" data-id=\"88f6270\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">Vers une meilleure orientation des patients\u00a0: Les Fili\u00e8res de Sant\u00e9 Maladies\nRares (FSMR)<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-978da56 elementor-widget elementor-widget-text-editor\" data-id=\"978da56\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\tInstitu\u00e9es par le deuxi\u00e8me Plan national maladies rares, les fili\u00e8res de sant\u00e9 maladies rares ont \u00e9t\u00e9 mises en place \u00e0 partir de la fin de l\u2019ann\u00e9e 2014 et dans le courant de l\u2019ann\u00e9e 2015.\n\nChaque fili\u00e8re couvre un groupe de maladies rares qui ont des points communs. Il peut s\u2019agir de maladies qui provoquent une atteinte d\u2019un m\u00eame organe ou syst\u00e8me et ont des manifestations proches. Elles demandent alors une prise en charge similaire. Il y a au total 23 fili\u00e8res de sant\u00e9 maladies rares.\n\nLes fili\u00e8res animent et coordonnent des actions dont le but est d\u2019am\u00e9liorer la prise en charge globale des personnes malades. Elles ont pour mission d\u2019am\u00e9liorer la bonne compr\u00e9hension de l\u2019offre de soins et de favoriser les travaux et projets communs d\u00e9velopp\u00e9s par les nombreux acteurs intervenant dans le domaine des maladies rares.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2d5307c elementor-widget elementor-widget-button\" data-id=\"2d5307c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/www.filieresmaladiesrares.fr\/\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">En savoir plus<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-af882c6\" data-id=\"af882c6\" data-element_type=\"column\" data-e-type=\"column\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-70294ae elementor-widget elementor-widget-text-editor\" data-id=\"70294ae\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<strong>Les plans maladies rares :<\/strong>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ed262e7 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"ed262e7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9747485 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"9747485\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul><li><a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/plan_national_maladies_rares_2005-2008.pdf\" target=\"_blank\" rel=\"noopener\">Premier plan 2005- 2008<\/a><\/li><li><a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/plan_national_maladies_rares_2011-2014.pdf\" target=\"_blank\" rel=\"noopener\">Deuxi\u00e8me plan 2011- 2014 prolong\u00e9 jusqu\u2019en 2016<\/a><\/li><li><a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/pnmr_3_v25-09pdf.pdf\" target=\"_blank\" rel=\"noopener\">Troisi\u00e8me plan 2018-2022<\/a><\/li><li><a href=\"https:\/\/sante.gouv.fr\/IMG\/pdf\/pnmr4_vf6.pdf\" target=\"_blank\" rel=\"noopener\">Quatri\u00e8me plan 2025-2030<\/a><\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6703a10 elementor-widget elementor-widget-text-editor\" data-id=\"6703a10\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<strong>La fili\u00e8re maladies rares pour l\u2019Ataxie de Friedreich :<\/strong>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d5ac2b3 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"d5ac2b3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b92f005 liens2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"b92f005\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul>\n \t<li>Centre de r\u00e9f\u00e9rence des maladies neurog\u00e9n\u00e9tiques\u00a0: <a href=\"http:\/\/brain-team.fr\/crmr-neurogene\/\" target=\"_blank\" rel=\"noopener\">Neurog\u00e8ne<\/a><\/li>\n \t<li><a href=\"http:\/\/brain-team.fr\/wp-content\/uploads\/2019\/05\/Plaquette-CRMR-V3-0321.pdf\" target=\"_blank\" rel=\"noopener\">Coordonn\u00e9es des centres de comp\u00e9tences<\/a><\/li>\n \t<li>Centre de r\u00e9f\u00e9rence des maladies mitochondriales\u00a0: <a href=\"https:\/\/carammel.org\" target=\"_blank\" rel=\"noopener\">Carammel<\/a><\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-69ae0e9 elementor-widget elementor-widget-text-editor\" data-id=\"69ae0e9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong>Documents associ\u00e9s :<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ed64775 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"ed64775\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0fe7837 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"0fe7837\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2024\/03\/ESP-174-Les-filieres-maladies-rares-Janvier-2024-Espoir-174.pdf\" target=\"_blank\" rel=\"noopener\">Les fili\u00e8res maladies rares &#8211; Janvier 2024 (Espoir 174)<\/a><\/li><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2024\/03\/Reseau-Centres-de-Reference-Ataxie-de-Friedreich-arrete-29-decembre-2023.pdf\" target=\"_blank\" rel=\"noopener\">Liste des centres de r\u00e9f\u00e9rence pour l&#8217;ataxie de Friedreich (arr\u00eat\u00e9 du 29 d\u00e9cembre 2023)<\/a><\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-8b9661f elementor-section-full_width elementor-section-stretched elementor-section-height-default elementor-section-height-default\" data-id=\"8b9661f\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;stretch_section&quot;:&quot;section-stretched&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-40214b2\" data-id=\"40214b2\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-d31c840 elementor-widget elementor-widget-shortcode\" data-id=\"d31c840\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"shortcode.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-shortcode\">\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"578\" class=\"elementor elementor-578\" data-elementor-post-type=\"oceanwp_library\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-43c347e elementor-section-stretched elementor-section-content-middle elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"43c347e\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;stretch_section&quot;:&quot;section-stretched&quot;,&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-186798c\" data-id=\"186798c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-04bb719 elementor-widget elementor-widget-image\" data-id=\"04bb719\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/elementor\/thumbs\/Logo-blanc_simple-1-q1ww1nh0svlc8x6kbcgbj84qq17mf0pfy8gdrayk1s.png\" title=\"Logo blanc_simple\" alt=\"logo AFAF (Association Fran\u00e7aise Ataxie Friedreich)\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-301d943\" data-id=\"301d943\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-2b47be8 elementor-widget elementor-widget-text-editor\" data-id=\"2b47be8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Avancer ensemble,<\/p><p>C&#8217;est aussi pouvoir compter sur votre aide !<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a663678 elementor-align-left elementor-mobile-align-left elementor-widget elementor-widget-button\" data-id=\"a663678\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-lg elementor-animation-grow\" href=\"https:\/\/www.afaf.asso.fr\/nous-soutenir\/donner\/\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Je fais un don<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>La recherche dans l\u2019Ataxie de Friedreich progresse \u00e0 grands pas. Si le traitement curatif n\u2019existe pas encore, le nombre croissant d&#8217;essais cliniques montre que des mol\u00e9cules sont tr\u00e8s proches pour d\u00e9j\u00e0 en ralentir l&#8217;\u00e9volution. L&#8217;\u00e9volution de chacun est diff\u00e9rente, tant dans sa rapidit\u00e9 que dans ses complications. C&#8217;est pourquoi une prise en charge m\u00e9dicale et [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":510,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_monsterinsights_skip_tracking":false,"ocean_front_end_style_editor":"no","ocean_post_layout":"full-screen","ocean_both_sidebars_style":"","ocean_both_sidebars_content_width":0,"ocean_both_sidebars_sidebars_width":0,"ocean_sidebar":"0","ocean_second_sidebar":"0","ocean_disable_margins":"enable","ocean_add_body_class":"","ocean_shortcode_before_top_bar":"","ocean_shortcode_after_top_bar":"","ocean_shortcode_before_header":"","ocean_shortcode_after_header":"","ocean_has_shortcode":"","ocean_shortcode_after_title":"","ocean_shortcode_before_footer_widgets":"","ocean_shortcode_after_footer_widgets":"","ocean_shortcode_before_footer_bottom":"","ocean_shortcode_after_footer_bottom":"","ocean_display_top_bar":"default","ocean_display_header":"default","ocean_header_style":"","ocean_center_header_left_menu":"0","ocean_custom_header_template":"0","ocean_custom_logo":0,"ocean_custom_retina_logo":0,"ocean_custom_logo_max_width":0,"ocean_custom_logo_tablet_max_width":0,"ocean_custom_logo_mobile_max_width":0,"ocean_custom_logo_max_height":0,"ocean_custom_logo_tablet_max_height":0,"ocean_custom_logo_mobile_max_height":0,"ocean_header_custom_menu":"0","ocean_menu_typo_font_family":"0","ocean_menu_typo_font_subset":"","ocean_menu_typo_font_size":0,"ocean_menu_typo_font_size_tablet":0,"ocean_menu_typo_font_size_mobile":0,"ocean_menu_typo_font_size_unit":"px","ocean_menu_typo_font_weight":"","ocean_menu_typo_font_weight_tablet":"","ocean_menu_typo_font_weight_mobile":"","ocean_menu_typo_transform":"","ocean_menu_typo_transform_tablet":"","ocean_menu_typo_transform_mobile":"","ocean_menu_typo_line_height":0,"ocean_menu_typo_line_height_tablet":0,"ocean_menu_typo_line_height_mobile":0,"ocean_menu_typo_line_height_unit":"","ocean_menu_typo_spacing":0,"ocean_menu_typo_spacing_tablet":0,"ocean_menu_typo_spacing_mobile":0,"ocean_menu_typo_spacing_unit":"","ocean_menu_link_color":"","ocean_menu_link_color_hover":"","ocean_menu_link_color_active":"","ocean_menu_link_background":"","ocean_menu_link_hover_background":"","ocean_menu_link_active_background":"","ocean_menu_social_links_bg":"","ocean_menu_social_hover_links_bg":"","ocean_menu_social_links_color":"","ocean_menu_social_hover_links_color":"","ocean_disable_title":"enable","ocean_disable_heading":"default","ocean_post_title":"","ocean_post_subheading":"","ocean_post_title_style":"","ocean_post_title_background_color":"","ocean_post_title_background":0,"ocean_post_title_bg_image_position":"","ocean_post_title_bg_image_attachment":"","ocean_post_title_bg_image_repeat":"","ocean_post_title_bg_image_size":"","ocean_post_title_height":0,"ocean_post_title_bg_overlay":0.5,"ocean_post_title_bg_overlay_color":"","ocean_disable_breadcrumbs":"on","ocean_breadcrumbs_color":"","ocean_breadcrumbs_separator_color":"","ocean_breadcrumbs_links_color":"","ocean_breadcrumbs_links_hover_color":"","ocean_display_footer_widgets":"default","ocean_display_footer_bottom":"default","ocean_custom_footer_template":"0","footnotes":""},"class_list":["post-597","page","type-page","status-publish","hentry","entry","owp-thumbs-layout-horizontal","owp-btn-normal","owp-tabs-layout-section","has-no-thumbnails"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Prise en charge m\u00e9dicale - Association Fran\u00e7aise Ataxie de Friedreich<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.afaf.asso.fr\/la-maladie\/prise-en-charge-medicale\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Prise en charge m\u00e9dicale - Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"og:description\" content=\"La recherche dans l\u2019Ataxie de Friedreich progresse \u00e0 grands pas. 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