{"id":641,"date":"2021-03-11T17:49:55","date_gmt":"2021-03-11T16:49:55","guid":{"rendered":"http:\/\/afpcahome\/site\/?page_id=641"},"modified":"2024-05-07T13:25:30","modified_gmt":"2024-05-07T11:25:30","slug":"contacts-utiles-organismes-medicaux-de-prise-en-charge-polychondrite","status":"publish","type":"page","link":"https:\/\/afpca.fr\/site\/contacts-utiles-organismes-medicaux-de-prise-en-charge-polychondrite\/","title":{"rendered":"Contacts utiles"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"641\" class=\"elementor elementor-641\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-28d3abe elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"28d3abe\" 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-33 elementor-top-column elementor-element elementor-element-0669667\" data-id=\"0669667\" 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-b306b8b elementor-align-center elementor-widget elementor-widget-button\" data-id=\"b306b8b\" 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:\/\/afpca.fr\/site\/contacter-lassociation\/\">\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\">Contacter l'association<\/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-33 elementor-top-column elementor-element elementor-element-10736c9\" data-id=\"10736c9\" 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-2a07648 elementor-align-center elementor-widget elementor-widget-button\" data-id=\"2a07648\" 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:\/\/afpca.fr\/site\/?page_id=237\">\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\">Centres de comp\u00e9tence<\/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-33 elementor-top-column elementor-element elementor-element-cfea77a\" data-id=\"cfea77a\" 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-a026c67 elementor-align-center elementor-widget elementor-widget-button\" data-id=\"a026c67\" 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:\/\/afpca.fr\/site\/?page_id=465\">\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\">Centres de r\u00e9f\u00e9rence<\/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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3cc0971 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3cc0971\" 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-49ad08a\" data-id=\"49ad08a\" 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-8579cac elementor-widget elementor-widget-image\" data-id=\"8579cac\" 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=\"1051\" height=\"251\" src=\"https:\/\/afpca.fr\/site\/wp-content\/uploads\/2021\/03\/group-2351896_1280-1-e1615981318398.png\" class=\"attachment-full size-full wp-image-658\" alt=\"\" srcset=\"https:\/\/afpca.fr\/site\/wp-content\/uploads\/2021\/03\/group-2351896_1280-1-e1615981318398.png 1051w, https:\/\/afpca.fr\/site\/wp-content\/uploads\/2021\/03\/group-2351896_1280-1-e1615981318398-300x72.png 300w, https:\/\/afpca.fr\/site\/wp-content\/uploads\/2021\/03\/group-2351896_1280-1-e1615981318398-1024x245.png 1024w, https:\/\/afpca.fr\/site\/wp-content\/uploads\/2021\/03\/group-2351896_1280-1-e1615981318398-768x183.png 768w\" sizes=\"(max-width: 1051px) 100vw, 1051px\" \/>\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<div class=\"elementor-element elementor-element-6116222 elementor-widget elementor-widget-text-editor\" data-id=\"6116222\" 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>Notre pathologie affectant en France un nombre tr\u00e8s r\u00e9duit de personnes (environ 300), on consid\u00e9rera en toute logique que l\u2019immense majorit\u00e9 des g\u00e9n\u00e9ralistes (et des sp\u00e9cialistes) ne seront que tr\u00e8s exceptionnellement, voire jamais, confront\u00e9s \u00e0 un cas de PCA au cours de leur carri\u00e8re. Cela explique cette errance diagnostique que l\u2019on \u00e9value \u00e0 <b>4 ans<\/b> en moyenne.<\/p><p>Si vous lisez ces lignes, c\u2019est que votre parcours, certainement difficile, vous confronte \u00e0 la PCA.<\/p><ul><li>Vous, ou l\u2019un de vos proches, \u00eates atteint par cette pathologie.<\/li><li>Vous avez encore un doute sur la nature des maux dont vous souffrez.<\/li><li>Vous estimez que les soins dont vous faites l\u2019objet ne sont pas adapt\u00e9s.<\/li><\/ul><p>Vous\u00a0 pouvez prendre connaissance de la &#8220;<strong><a href=\"https:\/\/afpca.fr\/site\/wp-content\/uploads\/2021\/10\/synthese_mg_polychondrite_chronique_atrophiante.pdf\">synth\u00e8se \u00e0 destination du m\u00e9decin traitant<\/a><\/strong>&#8221; extraite du <a href=\"https:\/\/afpca.fr\/site\/wp-content\/uploads\/2021\/10\/pnds_pca_vf_juin_2021.pdf\">Protocole National de Diagnostic et de Soins<\/a> (PNDS) d\u00e9di\u00e9e \u00e0 la Polychondrite Chronique Atrophiante.<\/p><p>Vous pouvez consulter le <strong><a href=\"https:\/\/afpca.fr\/site\/trouver-un-centre-de-competence\/\">centre de comp\u00e9tence des maladies auto-immunes et syst\u00e9miques rares\u00a0<\/a><\/strong> le plus proche de votre domicile.\u00a0<\/p><p>Sachez aussi que le &#8220;<strong><a href=\"https:\/\/www.afm-telethon.fr\/fr\/communiques-de-presse\/4e-plan-national-maladies-rares-des-mesures-decisives-attendues-pour-les-3\">Plan national maladies rares<\/a>&#8221;\u00a0<\/strong>a permis de labelliser environ 140 &#8220;<a href=\"https:\/\/afpca.fr\/site\/trouver-centre-de-reference\/\"><b>Centres de R\u00e9f\u00e9rence <\/b><\/a><strong><span style=\"color: #000000;\">maladies rares<\/span>&#8220;<\/strong>\u00a0sp\u00e9cialis\u00e9s chacun dans la coordination des soins d\u2019une ou plusieurs pathologies rares.<\/p><p>L\u2019AFPCA ne parraine ou ne recommande en particulier aucun m\u00e9decin sp\u00e9cialiste de la PCA, mais vous fournit la liste officielle des Centres de R\u00e9f\u00e9rence labellis\u00e9s ou sp\u00e9cialis\u00e9s dans les <b><a href=\"https:\/\/www.fai2r.org\/\">maladies auto-immunes syst\u00e9miques rares<\/a>,<\/b> ainsi que celle des <a href=\"https:\/\/afpca.fr\/site\/trouver-un-centre-de-competence\/\"><b>Centres de Comp\u00e9tence maladies auto-immunes syst\u00e9miques rares<\/b><\/a> susceptibles de vous prendre en charge en fonction de votre situation g\u00e9ographique.<\/p><p>Les services de m\u00e9decines et sp\u00e9cialistes mentionn\u00e9s dans ces listes ne sont pas les seuls \u00e0 avoir une bonne connaissance de la PCA. Que ceux qui n&#8217;ont pas trouv\u00e9 leur nom ne nous en veuillent pas, mais nous avons choisi de nous limiter aux labels officiels issus du plan maladies rares (principe de pr\u00e9caution oblige). Vous pouvez \u00e9galement <a href=\"https:\/\/afpca.fr\/site\/contacter-lassociation\/\">nous contacter<\/a>\u00a0 ou consulter le site de la <a href=\"https:\/\/www.fai2r.org\/les-centres-fai2r\/\">FAI2R.org<\/a><\/p><p>Cette <b>mise en relation <\/b>et l\u2019\u00e9change d\u2019information qui en r\u00e9sultent n\u2019engagent pas la responsabilit\u00e9 de l\u2019AFPCA.<\/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<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Contacter l&#8217;association Centres de comp\u00e9tence Centres de r\u00e9f\u00e9rence Notre pathologie affectant en France un nombre tr\u00e8s r\u00e9duit de personnes (environ 300), on consid\u00e9rera en toute logique que l\u2019immense majorit\u00e9 des g\u00e9n\u00e9ralistes (et des sp\u00e9cialistes) ne seront que tr\u00e8s exceptionnellement, voire jamais, confront\u00e9s \u00e0 un cas de PCA au cours de leur carri\u00e8re. Cela explique cette [&hellip;]<\/p>\n","protected":false},"author":10,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-641","page","type-page","status-publish","hentry","post"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Contacts utiles - Association Francophone Contre La Polychondrite Chronique Atrophiante<\/title>\n<meta name=\"description\" content=\"Vous pourrez consulter le centre de comp\u00e9tence des maladies auto-immunes et syst\u00e9miques rares le plus proche de votre domicile ainsi que la liste des centre de r\u00e9f\u00e9rences\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/afpca.fr\/site\/contacts-utiles-organismes-medicaux-de-prise-en-charge-polychondrite\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Contacts utiles - 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