{"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":"dagen-for-sjeldne-sykdommer-2020","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/rare-disease-day-2020\/","title":{"rendered":"Dagen for sjeldne sykdommer 2020"},"content":{"rendered":"<h4>OPPFORDRING TIL ALLE FORKJEMPERE!<\/h4>\n<p><em>29. februar 2020<\/em>, blir den 30. internasjonale dagen for sjeldne sykdommer, koordinert av EURORDIS. P\u00e5 og rundt denne dagen vil hundrevis av pasientorganisasjoner fra land og regioner over hele verden gjennomf\u00f8re bevisstgj\u00f8ringsaktiviteter.&nbsp;&nbsp;<\/p>\n<p>Omtrent 300 millioner mennesker (om lag 5% av befolkningen) lider av en sjelden sykdom. Av disse 5% er det f\u00e6rre enn 1 000 mennesker som lider av Erdheim-Chester-syndromet p\u00e5 verdensbasis.&nbsp;&nbsp;<\/p>\n<p><strong>J<\/strong><strong>Bli med i ECD Global Alliance og bidra til \u00e5 \u00f8ke bevisstheten om sjeldne sykdommer ved \u00e5 dele dine erfaringer med ECD.<\/strong>&nbsp;&nbsp;<\/p>\n<p>Temaet for Dagen for sjeldne sykdommer 2020 er \u201c<em>Likestilling for de millioner som lever med en sjelden sykdom!<\/em>\u201d&nbsp;&nbsp;<\/p>\n<ul>\n<li>Hvilke utfordringer har du m\u00f8tt n\u00e5r du har s\u00f8kt helsetjenester?&nbsp;<\/li>\n<li>Hvilke utfordringer opplever familien din n\u00e5r det gjelder sosiale kontakter og aktiviteter?&nbsp;<\/li>\n<li>Hva \u00f8nsker du at verden skal vite om livet med Erdheim-Chester-syndromet?<\/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>Del dette flygebladet p\u00e5 dine sosiale medier eller via e-post til kontaktene dine!&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\/nb\/wp-json\/wp\/v2\/posts\/5072","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=5072"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/5072\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/5073"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=5072"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=5072"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=5072"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}