{"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":"dagen-for-sjeldne-sykdommer-2023","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/2021-rare-disease-day\/","title":{"rendered":"Dagen for sjeldne sykdommer 2021"},"content":{"rendered":"<h1><strong>HVA ER DAGEN FOR SJELDNE SYKDOMMER?<\/strong><\/h1>\n<p><em>28. februar 2021<\/em>, blir den 14. 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.<\/p>\n<p>Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within that 5%, less than 1,000 people suffer from\u00a0Erdheim-Chester Disease worldwide.<\/p>\n<p><strong>Bli med i ECD Global Alliance og bidra til \u00e5 \u00f8ke bevisstheten om sjeldne sykdommer ved \u00e5 dele dine erfaringer med ECD.<\/strong><\/p>\n<p><a href=\"https:\/\/twitter.com\/intent\/tweet?url=https%3A\/\/youtu.be\/3bxaP9FJKnk&amp;text=Rare%20Disease%20Day%202021%20official%20video&amp;via=YouTube&amp;related=YouTube,YouTubeTrends,YTCreators\" target=\"_blank\" rel=\"noopener noreferrer\">Offisiell video til Dagen for sjeldne sykdommer\u00a0<\/a><\/p>\n<p>Finn flere ressurser og m\u00e5ter \u00e5 \u00f8ke bevisstheten p\u00e5 p\u00e5 v\u00e5r <a title=\"Spred budskapet\" href=\"https:\/\/www.erdheim-chester.org\/nb\/spre-budskapet-2\/\">Spred budskapet<\/a> nettsiden eller p\u00e5 <a href=\"https:\/\/www.rarediseaseday.org\/article\/get-involved\">Nettstedet for Dagen for sjeldne sykdommer<\/a>.<\/p>\n<p>Del dagen din med oss p\u00e5 sosiale medier ved \u00e5 tagge @ECDGA p\u00e5 Facebook og bruke hashtaggen #ECDawareness p\u00e5 alle sosiale medier. Vi setter pris p\u00e5 om du ogs\u00e5 tar kontakt med oss, slik at vi kan bruke historien din, sitatet ditt, bildet ditt og\/eller innlegget ditt p\u00e5 ECDGAs sider p\u00e5 sosiale medier.<\/p>\n<p><strong>Les v\u00e5r nyeste pasienthistorie, som ble publisert i anledning \u00e5rets dag for sjeldne sykdommer: <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/A-Spiritual-Journey-Through-ECD-Dean-William.pdf\">En \u00e5ndelig reise gjennom ECD<\/a><\/strong><\/p>\n<p><strong>Del dette flygebladet p\u00e5 dine sosiale medier eller via e-post <\/strong><strong>sammen med kontaktene dine!<\/strong><\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-175289 size-full alignleft\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg\" alt=\"\" width=\"232\" height=\"300\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg 232w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1-9x12.jpg 9w\" sizes=\"(max-width: 232px) 100vw, 232px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><em><strong>Uansett hva du gj\u00f8r p\u00e5 denne dagen for sjeldne sykdommer, er din interesseorganisasjon her for \u00e5 st\u00f8tte deg p\u00e5 veien! Takk for at du b\u00e6rer b\u00e5ndet for sjeldne sykdommer med stolthet!<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>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 [&hellip;]<\/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\/nb\/wp-json\/wp\/v2\/posts\/19549","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=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}