{"id":5072,"date":"2020-02-25T23:30:43","date_gmt":"2020-02-25T23:30:43","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=5072"},"modified":"2025-08-23T20:21:24","modified_gmt":"2025-08-24T00:21:24","slug":"journee-des-maladies-rares-2022","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/rare-disease-day-2020\/","title":{"rendered":"Journ\u00e9e des maladies rares 2020"},"content":{"rendered":"<h4>APPEL \u00c0 TOUS LES MILITANTS !<\/h4>\n<p><em>29 f\u00e9vrier 2020<\/em>, marquera la 30e Journ\u00e9e internationale des maladies rares, coordonn\u00e9e par EURORDIS. Ce jour-l\u00e0 et aux alentours de cette date, des centaines d'associations de patients issues de pays et de r\u00e9gions du monde entier organiseront des actions de sensibilisation.&nbsp;&nbsp;<\/p>\n<p>Environ 300 millions de personnes (soit environ 5% de la population) sont atteintes d'une maladie rare. Parmi ces 5%, moins de 1 000 personnes dans le monde sont atteintes de la maladie d'Erdheim-Chester.&nbsp;&nbsp;<\/p>\n<p><strong>J<\/strong><strong>Rejoignez l'Alliance mondiale ECD pour contribuer \u00e0 la sensibilisation aux maladies rares en partageant votre exp\u00e9rience avec l'ECD.<\/strong>&nbsp;&nbsp;<\/p>\n<p>Le th\u00e8me de la Journ\u00e9e des maladies rares 2020 est \u201c<em>L'\u00e9galit\u00e9 pour les millions de personnes atteintes d'une maladie rare !<\/em>\u201d&nbsp;&nbsp;<\/p>\n<ul>\n<li>Quels obstacles avez-vous rencontr\u00e9s lorsque vous avez d\u00fb faire appel aux services de sant\u00e9 ?&nbsp;<\/li>\n<li>Quelles sont les difficult\u00e9s auxquelles votre famille est confront\u00e9e en mati\u00e8re de relations sociales et d'activit\u00e9s ?&nbsp;<\/li>\n<li>Que souhaitez-vous que le monde sache sur la vie avec la maladie d'Erdheim-Chester ?<\/li>\n<\/ul>\n<p>How will you show your stripes? Share with us on the media, by tagging @ECDGA on Facebook and #ECDawareness&nbsp;on any site. Contact us to put your story, quote, photo, and\/or post on our public Facebook page.<\/p>\n<p>Partagez ce prospectus sur vos r\u00e9seaux sociaux ou par e-mail avec vos contacts !&nbsp;<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/02\/Facebook-RDD-2020.png\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-5074 size-medium\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/02\/Facebook-RDD-2020-300x251.png\" alt=\"\" width=\"300\" height=\"251\"><\/a><\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>CALLING ALL ADVOCATES! February 29, 2020, will be the 30th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries and regions [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":5073,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[55,54,59,53,58,56,69,57,68,75],"class_list":["post-5072","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-advocacy","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-pain","tag-rare-disease-day"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/5072","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=5072"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/5072\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/5073"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=5072"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=5072"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=5072"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}