{"id":922,"date":"2022-07-20T16:51:28","date_gmt":"2022-07-20T14:51:28","guid":{"rendered":"https:\/\/www.afaf.asso.fr\/?page_id=922"},"modified":"2023-08-24T17:45:58","modified_gmt":"2023-08-24T15:45:58","slug":"pour-les-soignants","status":"publish","type":"page","link":"https:\/\/www.afaf.asso.fr\/la-maladie\/pour-les-soignants\/","title":{"rendered":"Pour les soignants"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"922\" class=\"elementor elementor-922\" 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 lien-ancre 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>Retrouvez ici :<\/p><ul><li>Le 1er <a href=\"#protocole-national-diagnostic-et-soins\">protocole national de diagnostic et de soins (PNDS)<\/a> pour l&#8217;ataxie de Friedreich, r\u00e9dig\u00e9 par les experts du centre de r\u00e9f\u00e9rence Neurog\u00e8ne avec la participation de l&#8217;AFAF (octobre 2021).<\/li><li>L\u2019AFAF met \u00e0 disposition des <a href=\"#lettres-informations\">lettres d\u2019information<\/a> destin\u00e9es aux soignants, ainsi que diff\u00e9rents documents sp\u00e9cifiques.<\/li><li>Diff\u00e9rents <a href=\"#autres-documents\">autres documents <\/a>sur la prise en charge<\/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<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=\"protocole-national-diagnostic-et-soins\">\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\">Protocole National de Diagnostic et de Soins (PNDS)<\/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-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-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\tLes protocoles nationaux de diagnostic et de soins (PNDS) sont des r\u00e9f\u00e9rentiels de bonne pratique portant sur les maladies rares. L\u2019objectif d\u2019un PNDS est d\u2019expliciter aux professionnels concern\u00e9s la prise en charge diagnostique et th\u00e9rapeutique optimale et le parcours de soins d\u2019un patient atteint d\u2019une maladie rare donn\u00e9e.Comme le pr\u00e9voit le deuxi\u00e8me plan national maladies rares 2011-2014, ils sont \u00e9labor\u00e9s par les centres de r\u00e9f\u00e9rence et de comp\u00e9tence maladies rares \u00e0 l&#8217;aide d&#8217;une\u00a0<a class=\"nouvelle-fenetre\" href=\"https:\/\/www.has-sante.fr\/jcms\/c_1340205\/methode-d-elaboration-des-protocoles-nationaux-de-diagnostic-et-de-soins-pnds\" target=\"_blank\" rel=\"noopener\">m\u00e9thode propos\u00e9e par la Haute Autorit\u00e9 de Sant\u00e9<\/a>\u00a0(HAS).\n\nLes PNDS ne font pas l\u2019objet d\u2019une validation par la HAS, qui ne participe pas \u00e0 leur \u00e9laboration. En revanche, la HAS\u00a0se r\u00e9serve le droit de proc\u00e9der \u00e0 un\u00a0<a class=\"nouvelle-fenetre\" href=\"https:\/\/www.has-sante.fr\/jcms\/c_2011708\/fr\/audit-pnds\" target=\"_blank\" rel=\"noopener\">audit<\/a>\u00a0de la qualit\u00e9 m\u00e9thodologique de quelques PNDS.\n\nLes PNDS comportent une partie \u00ab\u00a0synth\u00e8se destin\u00e9e au m\u00e9decin traitant\u00a0\u00bb.\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-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<p><strong>Le PNDS est disponible :<\/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-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-db069d4 liens2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"db069d4\" 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>Sur le site de la <a href=\"https:\/\/www.has-sante.fr\/jcms\/p_3290014\/fr\/ataxie-de-friedreich\" target=\"_blank\" rel=\"noopener\">HAS<\/a><\/li>\n \t<li>Sur le site de <a href=\"http:\/\/brain-team.fr\/protocolesnationaux\/\" target=\"_blank\" rel=\"noopener\">BRAIN-TEAM<\/a><\/li>\n \t<li>Sur les site de <a href=\"http:\/\/brain-team.fr\/crmr-neurogene\/\" target=\"_blank\" rel=\"noopener\">Centre de R\u00e9f\u00e9rence NeuroG\u00c8NE <\/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\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-ec8974e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"ec8974e\" 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-85674fb\" data-id=\"85674fb\" 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-0efbb33 elementor-widget elementor-widget-heading\" data-id=\"0efbb33\" data-element_type=\"widget\" data-e-type=\"widget\" id=\"lettres-informations\" 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\">Lettres d\u2019informations<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-69eeab5 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"69eeab5\" 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-f4e57a6 elementor-widget elementor-widget-text-editor\" data-id=\"f4e57a6\" 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\u2019AFAF a publi\u00e9 diff\u00e9rentes lettres d\u2019information \u00e0 destination des soignants, sur diff\u00e9rents th\u00e8mes concernant l\u2019ataxie de Friedreich. Vous les trouverez sur cette page, par l\u2019outil de recherche, et pouvez <a href=\"https:\/\/www.afaf.asso.fr\/contact\/\">nous contacter<\/a> pour les recevoir r\u00e9guli\u00e8rement.<\/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-90a3e96 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"90a3e96\" 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=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL13_Les-proble\u0300mes-respiratoires-dans-les-ataxies.pdf\" target=\"_blank\" rel=\"noopener\">NL13_Les probl\u00e8mes respiratoires dans les ataxies-2018<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL12_La-douleur-dans-les-Ataxies.pdf\" target=\"_blank\" rel=\"noopener\">NL12_La douleur dans les Ataxies \u2013 2015<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL11_Le-coeur-chez-les-adultes.pdf\" target=\"_blank\" rel=\"noopener\">NL11_Le c\u0153ur chez les adultes \u2013 2015<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL10_Les-proble\u0300mes-ophtalmologiques.pdf\" target=\"_blank\" rel=\"noopener\">NL10_Les probl\u00e8mes ophtalmologiques \u2013 2015><\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL9_Ou-trouver-de-linformation2.pdf\" target=\"_blank\" rel=\"noopener\">NL9 Ou trouver de l\u2019information \u2013 2011<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL8_Les-troubles-de-la-de\u0301glutition.pdf\" target=\"_blank\" rel=\"noopener\">NL8 Les troubles de la d\u00e9glutition \u2013 2010<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL7_Le-ro\u0302le-de-la-consultation-en-me\u0301decine-physique-et-de-re\u0301adaptation.pdf\" target=\"_blank\" rel=\"noopener\">NL7 Le r\u00f4le de la consultation en m\u00e9decine physique et de r\u00e9adaptation \u2013 2010<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL6_Les-troubles-urinaires.pdf\" target=\"_blank\" rel=\"noopener\">NL6 Les troubles urinaires \u2013 2009<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL5_La-prise-en-charge-de-la-spaticite\u0301.pdf\" target=\"_blank\" rel=\"noopener\">NL5 La prise en charge de la spasticit\u00e9 \u2013 2008<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL4_Le-test-ge\u0301ne\u0301tique.pdf\" target=\"_blank\" rel=\"noopener\">NL4 Le test g\u00e9n\u00e9tique \u2013 2008<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL3_-La-grossesse.pdf\" target=\"_blank\" rel=\"noopener\">NL3 La grossesse \u2013 2007<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL2_La-prise-en-chrge-psychologique1.pdf\" target=\"_blank\" rel=\"noopener\">NL2 La prise en charge psychologique \u2013 2007<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL1_Les-questions-qui-se-posent1.pdf\" target=\"_blank\" rel=\"noopener\">NL1 Les questions qui se posent \u2013 2005<\/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-3c50846 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3c50846\" data-element_type=\"section\" data-e-type=\"section\" id=\"autres-documents\">\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-4871f48\" data-id=\"4871f48\" 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-d38b4b4 elementor-widget elementor-widget-heading\" data-id=\"d38b4b4\" 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\">Autres documents<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-51a0639 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"51a0639\" 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-bc46d40 elementor-widget elementor-widget-text-editor\" data-id=\"bc46d40\" 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>Vous pouvez \u00e9galement les trouver dans l\u2019espace de recherche. Certains textes sont extraits des revues Espoir, \u00e9dit\u00e9e par l\u2019AFAF pour ses adh\u00e9rents. N\u2019h\u00e9sitez pas \u00e0 <a href=\"https:\/\/www.afaf.asso.fr\/contact\/\">nous contacter<\/a> pour recevoir des informations r\u00e9guli\u00e8rement.<\/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-be0e0d4 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"be0e0d4\" 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<\/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\">Communiqu\u00e9 concernant la prolongation des prescriptions du Mnesis par ATU \u2013 D\u00e9cembre 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-58c92a2 pdf2-colonne-laterale elementor-widget elementor-widget-text-editor\" data-id=\"58c92a2\" 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-3c5b4b9 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"3c5b4b9\" 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 (Powerpoint)<\/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-b635399 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"b635399\" 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\/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-9e8cd07 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"9e8cd07\" 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>Accompagnement en fin de vie : les lois<\/strong>\n<ul>\n \t<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 Avril 2014 (Espoir 137)<\/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-c8b0a8e pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"c8b0a8e\" 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>Kin\u00e9sith\u00e9rapie<\/strong><\/p><ul><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/08\/Fiches-de-prise-en-charges-de-lAtaxie-de-Freidreich-a-destination-des-kinesitherapeutes-2023.pdf\" target=\"_blank\" rel=\"noopener\">Fiches de prise en charges de l&#8217;Ataxie de Freidreich \u00e0 destination des kin\u00e9sith\u00e9rapeutes (2023)<\/a><\/li><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP148_Tole\u0301rance-a\u0300-lexercice-et-capacite\u0301-physique-des-patients-atteints-dune-AF-tardive_Equipe-Dr-Choumert_Mars-2017-Espoir-148.pdf\" target=\"_blank\" rel=\"noopener\">Tole\u0301rance a\u0300 l\u2019exercice et capacite\u0301 physique des patients atteints d\u2019une AF tardive &#8211; Equipe Dr Choumert, mars 2017 (Espoir 148)<\/a><\/li><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP144_Le-sport-dans-lataxie-de-Friedreich_Equipe-Robert-Debre\u0301_Avril-2016-Espoir-144.pdf\" target=\"_blank\" rel=\"noopener\">Le sport dans l\u2019ataxie de Friedreich\u00a0&#8211; Equipe Robert Debre\u0301, avril 2016 (Espoir 144)<\/a><\/li><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/La-kine\u0301sithe\u0301rapie-dans-lAtaxie-de-Friedreich-Bastien-Roche.pdf\" target=\"_blank\" rel=\"noopener\">La kine\u0301sithe\u0301rapie dans l\u2019Ataxie de Friedreich &#8211; Bastien Roche, 2014 (Espoir 137)<\/a><\/li><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Les-pieds-dans-lAtaxie-de-Friedreich1.pdf\" target=\"_blank\" rel=\"noopener\">Les pieds dans l\u2019Ataxie de Friedreich &#8211; Equipe Robert Debre\u0301, 2015 (Espoir 139)<\/a><\/li><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Les-chevilles-dans-lAtaxie-de-Friedreich.pdf\" target=\"_blank\" rel=\"noopener\">Les chevilles dans l\u2019Ataxie de Friedreich &#8211; Equipe Robert Debre\u0301, avril 2015<\/a><\/li><li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/La-place-de-la-re\u0301e\u0301ducation-dans-les-syndromes-ce\u0301re\u0301belleux.pdf\" target=\"_blank\" rel=\"noopener\">La place de la re\u0301e\u0301ducation dans les syndromes ce\u0301re\u0301belleux &#8211; 2002 (Espoir 93)<\/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-f369e84 pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"f369e84\" 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>Orthophonie<\/strong>\n<ul>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Le-ro\u0302le-de-lOrthophoniste-dans-la-prise-en-charge-dun-patient-ataxique.pdf\" target=\"_blank\" rel=\"noopener\">Le ro\u0302le de l\u2019Orthophoniste dans la prise en charge d\u2019un patient ataxique \u2013 2004<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL8_Les-troubles-de-la-de\u0301glutition.pdf\" target=\"_blank\" rel=\"noopener\">NL8_Les troubles de la de\u0301glutition \u2013 2010<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/10\/Recherche-orthophonique-sur-la-maladie-de-Friedreich-4.pdf\" target=\"_blank\" rel=\"noopener\">Recherche orthophonique sur la maladie de Friedreich -Sandrine Perrin, Genevie\u0300ve Hermer_Avril 2016<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/resultats_details_etude_ressenti_voix_parole.pdf\" target=\"_blank\" rel=\"noopener\">E\u0301tude sur le ressenti de la voix et de la parole \u2013 Sandrine Perrin,Genevie\u0300ve Hermer_2016<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/Les-re\u0301sultats-de-le\u0301tude-ORFA_A.-Durr-S.-Borel_Avril-2019-Espoir-1591.pdf\" target=\"_blank\" rel=\"noopener\">Les re\u0301sultats de l\u2019e\u0301tude ORFA\u00a0&#8211; A. Durr, S. Borel_Avril 2019 (Espoir 159)<\/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-c36e7ea pdf2-colonne-laterale elementor-widget elementor-widget-text-editor\" data-id=\"c36e7ea\" 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>Ergoth\u00e9rapie<\/strong>\n<ul>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/la-vie-pratique\/habitat\/\">Am\u00e9nagement de l\u2019habitat<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/la-vie-pratique\/aides-humaines-techniques\/\">Aides techniques<\/a><\/li>\n \t<li class=\"nouvelle-fenetre\"><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP157_Des-solutions-adapte\u0301es-pour-gommer-le-handicap_G.Cavaille\u0301-M.Vandesteene_Octobre-2019-Espoir-157.pdf\" target=\"_blank\" rel=\"noopener\">Des solutions adapte\u0301es pour gommer le handicap &#8211; G.Cavaille\u0301, M.Vandesteene, octobre 2019 (Espoir 157)<\/a><\/li>\n \t<li class=\"nouvelle-fenetre\"><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP149_Sur-le-Forum-le-rail-de-transfert_Jacques-Mesnildrey_Octobre-2017-Espoir-149.pdf\" target=\"_blank\" rel=\"noopener\">Sur le Forum : le rail de transfert\u00a0&#8211; Jacques Mesnildrey, octobre 2017 (Espoir 149)<\/a><\/li>\n \t<li class=\"nouvelle-fenetre\"><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP148_Ateliers-transferts-et-aides-diverses_G.Cavaille\u0301-M.Vandesteene_Avril-2017-Espoir-148.pdf\" target=\"_blank\" rel=\"noopener\">Ateliers transferts et aides diverses\u00a0&#8211; G.Cavaille\u0301, M.Vandesteene, avril 2017 (Espoir 148)<\/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-740beaf pdf2-colonne-laterale nouvelle-fenetre elementor-widget elementor-widget-text-editor\" data-id=\"740beaf\" 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>Psychologie<\/strong>\n<ul>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/ESP144_Pre\u0301server-lautonomie-chez-les-enfants-et-adolescents-ataxiques_Vincent-Amelot_Avril-2016-Espoir-144.pdf\" target=\"_blank\" rel=\"noopener\">Pre\u0301server l\u2019autonomie chez les enfants et adolescents ataxiques &#8211; Vincent Amelot, avril 2016 (Espoir 144)<\/a><\/li>\n \t<li><a href=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2022\/09\/NL2_La-prise-en-chrge-psychologique1.pdf\" target=\"_blank\" rel=\"noopener\">NL2 La prise en charge psychologique \u2013 2007<\/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-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>Retrouvez ici : Le 1er protocole national de diagnostic et de soins (PNDS) pour l&#8217;ataxie de Friedreich, r\u00e9dig\u00e9 par les experts du centre de r\u00e9f\u00e9rence Neurog\u00e8ne avec la participation de l&#8217;AFAF (octobre 2021). L\u2019AFAF met \u00e0 disposition des lettres d\u2019information destin\u00e9es aux soignants, ainsi que diff\u00e9rents documents sp\u00e9cifiques. 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