{"id":8339,"date":"2023-03-06T13:05:26","date_gmt":"2023-03-06T12:05:26","guid":{"rendered":"https:\/\/www.ease.fr\/wordpress\/?p=8339"},"modified":"2023-03-06T13:05:34","modified_gmt":"2023-03-06T12:05:34","slug":"avf-algies-vasculaires-de-la-face-handicap-invisible","status":"publish","type":"post","link":"https:\/\/www.ease.fr\/wordpress\/2023\/03\/06\/avf-algies-vasculaires-de-la-face-handicap-invisible\/","title":{"rendered":"AVF &#8211; Algies Vasculaires de la face &#8211; Handicap invisible"},"content":{"rendered":"\n<p><strong>Notre membre principal souffre de cette triste maladie. Voici un petit topo, Ivan \u00e9cris : <\/strong><\/p>\n\n\n\n<p><strong>\u00ab\u00a0Je suis membre d&rsquo;une association qui milite pour l&rsquo;acc\u00e8s aux soins des malades d&rsquo;algies vasculaires de la face, une maladie rare et extr\u00eamement douloureuse.<\/strong><\/p>\n\n\n\n<p><strong>Nous avons constat\u00e9 que de nombreux patients souffrant de cette maladie ont du mal \u00e0 acc\u00e9der aux traitements n\u00e9cessaires, en raison du manque d&rsquo;informations disponibles sur cette pathologie et du faible nombre de professionnels de sant\u00e9 form\u00e9s \u00e0 sa prise en charge.<\/strong><\/p>\n\n\n\n<p><strong>Nous estimons que tous les patients, quels que soient leur \u00e2ge, leur sexe, leur origine ou leur situation financi\u00e8re, ont le droit de recevoir les soins adapt\u00e9s \u00e0 leur maladie. C&rsquo;est pourquoi nous nous mobilisons pour faire entendre leur voix et pour sensibiliser les professionnels de sant\u00e9 \u00e0 cette pathologie m\u00e9connue.<\/strong><\/p>\n\n\n\n<p><strong>Nous avons d\u00e9j\u00e0 organis\u00e9 plusieurs \u00e9v\u00e9nements pour informer le grand public sur cette maladie rare, et nous travaillons actuellement sur plusieurs projets pour am\u00e9liorer l&rsquo;acc\u00e8s aux soins pour les patients atteints d&rsquo;algies vasculaires de la face.<\/strong><\/p>\n\n\n\n<p><strong>Je vous serais reconnaissant(e) si vous pouviez soutenir notre cause en diffusant l&rsquo;information autour de vous, en vous impliquant dans nos actions ou en faisant un don \u00e0 notre association. Ensemble, nous pouvons faire bouger les choses et permettre \u00e0 tous les patients de b\u00e9n\u00e9ficier des soins dont ils ont besoin.\u00a0\u00bb<\/strong><\/p>\n\n\n\n<p><strong>Les Handicap invisibles sont nombreux. Faisons ensembles attention aux uns et aux autres.<\/strong><\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"225\" height=\"225\" data-id=\"8342\" src=\"https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-invisible-2.png\" alt=\"\" class=\"wp-image-8342\" srcset=\"https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-invisible-2.png 225w, https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-invisible-2-100x100.png 100w, https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-invisible-2-150x150.png 150w\" sizes=\"(max-width: 225px) 100vw, 225px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"420\" height=\"420\" data-id=\"8341\" src=\"https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-Invisible.jpg\" alt=\"\" class=\"wp-image-8341\" srcset=\"https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-Invisible.jpg 420w, https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-Invisible-300x300.jpg 300w, https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-Invisible-100x100.jpg 100w, https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-Invisible-150x150.jpg 150w\" sizes=\"(max-width: 420px) 100vw, 420px\" \/><\/figure>\n<figcaption class=\"blocks-gallery-caption wp-element-caption\"><strong>Les Handicaps sont parfois invisibles.<\/strong><\/figcaption><\/figure>\n<span class=\"et_bloom_bottom_trigger\"><\/span>","protected":false},"excerpt":{"rendered":"<p>Notre membre principal souffre de cette triste maladie. Voici un petit topo, Ivan \u00e9cris : \u00ab\u00a0Je suis membre d&rsquo;une association qui milite pour l&rsquo;acc\u00e8s aux soins des malades d&rsquo;algies vasculaires de la face, une maladie rare et extr\u00eamement douloureuse. Nous avons constat\u00e9 que de nombreux patients souffrant de cette maladie ont du mal \u00e0 acc\u00e9der [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":8341,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","episode_type":"audio","audio_file":"","podmotor_file_id":"","podmotor_episode_id":"","cover_image":"","cover_image_id":"","duration":"","filesize":"","filesize_raw":"","date_recorded":"","explicit":"","block":"","itunes_episode_number":"","itunes_title":"","itunes_season_number":"","itunes_episode_type":"","footnotes":""},"categories":[40],"tags":[],"series":[],"class_list":["post-8339","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-handicap"],"aioseo_notices":[],"episode_featured_image":"https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/Handicap-Invisible.jpg","episode_player_image":"https:\/\/www.ease.fr\/wordpress\/wp-content\/uploads\/2019\/12\/1200px-Feed-icon.svg.png","download_link":"","player_link":"","audio_player":false,"episode_data":{"playerMode":"dark","subscribeUrls":{"deezer":{"key":"deezer","url":"https:\/\/deezer.com\/show\/4479277","label":"Deezer","class":"deezer","icon":"deezer.png"},"rss":{"key":"rss","url":"","label":"RSS","class":"rss","icon":"rss.png"},"spotify":{"key":"spotify","url":"","label":"Spotify","class":"spotify","icon":"spotify.png"},"tunein":{"key":"tunein","url":"","label":"TuneIn","class":"tunein","icon":"tunein.png"},"youtube":{"key":"youtube","url":"https:\/\/www.youtube.com\/channel\/UCRBu6RTof_RAHHAxUGq1XKg","label":"YouTube","class":"youtube","icon":"youtube.png"},"itunes":{"key":"itunes","url":"","label":"iTunes","class":"itunes","icon":"itunes.png"}},"rssFeedUrl":"https:\/\/www.ease.fr\/wordpress\/feed\/podcast\/default-podcast","embedCode":"<blockquote class=\"wp-embedded-content\" data-secret=\"YrSktX5wiI\"><a href=\"https:\/\/www.ease.fr\/wordpress\/2023\/03\/06\/avf-algies-vasculaires-de-la-face-handicap-invisible\/\">AVF &#8211; Algies Vasculaires de la face &#8211; Handicap invisible<\/a><\/blockquote><iframe sandbox=\"allow-scripts\" security=\"restricted\" src=\"https:\/\/www.ease.fr\/wordpress\/2023\/03\/06\/avf-algies-vasculaires-de-la-face-handicap-invisible\/embed\/#?secret=YrSktX5wiI\" width=\"500\" height=\"350\" title=\"\u00ab\u00a0AVF &#8211; Algies Vasculaires de la face &#8211; Handicap invisible\u00a0\u00bb &#8212; Le Journal des Poules\" data-secret=\"YrSktX5wiI\" frameborder=\"0\" marginwidth=\"0\" marginheight=\"0\" scrolling=\"no\" class=\"wp-embedded-content\"><\/iframe><script type=\"text\/javascript\">\n\/* <![CDATA[ *\/\n\/*! This file is auto-generated *\/\n!function(d,l){\"use strict\";l.querySelector&&d.addEventListener&&\"undefined\"!=typeof URL&&(d.wp=d.wp||{},d.wp.receiveEmbedMessage||(d.wp.receiveEmbedMessage=function(e){var t=e.data;if((t||t.secret||t.message||t.value)&&!\/[^a-zA-Z0-9]\/.test(t.secret)){for(var s,r,n,a=l.querySelectorAll('iframe[data-secret=\"'+t.secret+'\"]'),o=l.querySelectorAll('blockquote[data-secret=\"'+t.secret+'\"]'),c=new RegExp(\"^https?:$\",\"i\"),i=0;i<o.length;i++)o[i].style.display=\"none\";for(i=0;i<a.length;i++)s=a[i],e.source===s.contentWindow&&(s.removeAttribute(\"style\"),\"height\"===t.message?(1e3<(r=parseInt(t.value,10))?r=1e3:~~r<200&&(r=200),s.height=r):\"link\"===t.message&&(r=new URL(s.getAttribute(\"src\")),n=new URL(t.value),c.test(n.protocol))&&n.host===r.host&&l.activeElement===s&&(d.top.location.href=t.value))}},d.addEventListener(\"message\",d.wp.receiveEmbedMessage,!1),l.addEventListener(\"DOMContentLoaded\",function(){for(var e,t,s=l.querySelectorAll(\"iframe.wp-embedded-content\"),r=0;r<s.length;r++)(t=(e=s[r]).getAttribute(\"data-secret\"))||(t=Math.random().toString(36).substring(2,12),e.src+=\"#?secret=\"+t,e.setAttribute(\"data-secret\",t)),e.contentWindow.postMessage({message:\"ready\",secret:t},\"*\")},!1)))}(window,document);\n\/\/# sourceURL=https:\/\/www.ease.fr\/wordpress\/wp-includes\/js\/wp-embed.min.js\n\/* ]]> *\/\n<\/script>\n"},"_links":{"self":[{"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/posts\/8339","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/comments?post=8339"}],"version-history":[{"count":1,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/posts\/8339\/revisions"}],"predecessor-version":[{"id":8343,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/posts\/8339\/revisions\/8343"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/media\/8341"}],"wp:attachment":[{"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/media?parent=8339"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/categories?post=8339"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/tags?post=8339"},{"taxonomy":"series","embeddable":true,"href":"https:\/\/www.ease.fr\/wordpress\/wp-json\/wp\/v2\/series?post=8339"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}