{"id":19549,"date":"2021-02-17T17:02:46","date_gmt":"2021-02-17T17:02:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=19549"},"modified":"2026-08-19T07:08:41","modified_gmt":"2026-08-19T12:08:41","slug":"journee-des-maladies-rares-2021","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/2021-rare-disease-day\/","title":{"rendered":"Journ\u00e9e des maladies rares 2021"},"content":{"rendered":"

QU'EST-CE QUE LA JOURN\u00c9E DES MALADIES RARES ?<\/strong><\/h1>\n

28 f\u00e9vrier 2021<\/em>, marquera la 14e 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.<\/p>\n

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 sont atteintes de la maladie d'Erdheim-Chester dans le monde.<\/p>\n

Rejoignez l'Alliance mondiale ECD pour contribuer \u00e0 la sensibilisation aux maladies rares en partageant votre exp\u00e9rience avec l'ECD.<\/strong><\/p>\n

Vid\u00e9o officielle de la Journ\u00e9e des maladies rares\u00a0<\/a><\/p>\n

D\u00e9couvrez d'autres ressources et moyens de sensibiliser le public sur notre Fais passer le message<\/a> page Web ou sur le Site web de la Journ\u00e9e des maladies rares<\/a>.<\/p>\n

Partagez votre journ\u00e9e avec nous sur les r\u00e9seaux sociaux en taguant @ECDGA sur Facebook et en utilisant le hashtag ##ECDawareness sur n'importe quelle plateforme. N'h\u00e9sitez pas \u00e0 nous contacter si vous souhaitez que nous publiions votre t\u00e9moignage, votre citation, votre photo et\/ou votre publication sur les pages de l'ECDGA.<\/p>\n

D\u00e9couvrez le dernier t\u00e9moignage de patient, publi\u00e9 \u00e0 l'occasion de la Journ\u00e9e des maladies rares de cette ann\u00e9e : Un parcours spirituel \u00e0 travers l'ECD<\/a><\/strong><\/p>\n

Partagez ce prospectus sur vos pages de r\u00e9seaux sociaux ou par e-mail <\/strong>avec vos contacts !<\/strong><\/p>\n

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Quoi que vous fassiez \u00e0 l'occasion de cette Journ\u00e9e des maladies rares, votre association de d\u00e9fense est l\u00e0 pour vous accompagner dans votre parcours ! Merci de porter fi\u00e8rement votre ruban des maladies rares !<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"

WHAT IS RARE DISEASE DAY? February 28, 2021, will be the 14th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries […]<\/p>\n","protected":false},"author":14,"featured_media":19553,"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":[51,70],"tags":[55,101,83,54,59,53,58,56,69,57,82,52,75],"class_list":["post-19549","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research-awareness","tag-advocacy","tag-awareness","tag-blood-cancer","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-rare-cancer","tag-rare-disease","tag-rare-disease-day"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/19549","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=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}