{"id":61513,"date":"2021-02-17T17:02:46","date_gmt":"2021-02-17T22:02:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/2021-dag-for-sjeldne-sykdommer\/"},"modified":"2025-08-23T18:18:45","modified_gmt":"2025-08-23T22:18:45","slug":"2021-dag-for-sjeldne-sykdommer","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/no\/2021-dag-for-sjeldne-sykdommer\/","title":{"rendered":"2021 Dag for sjeldne sykdommer"},"content":{"rendered":"<h1><strong>HVA ER DAGEN FOR SJELDNE SYKDOMMER?<\/strong><\/h1>\n<p><em>28. februar 2021<\/em> arrangeres 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 arrangere aktiviteter for \u00e5 \u00f8ke bevisstheten. &nbsp;&nbsp;<\/p>\n<p>Omtrent 300 millioner mennesker (ca. 5 % av befolkningen) lider av en sjelden sykdom. Innenfor disse 5 % er det mindre enn 1 000 personer som lider av Erdheim-Chester Sykdom p\u00e5 verdensbasis. &nbsp;&nbsp;<\/p>\n<p><strong>Bli med ECD Global Alliance i arbeidet med \u00e5 spre kunnskap om sjeldne sykdommer ved \u00e5 dele dine erfaringer med ECD.<\/strong>&nbsp;&nbsp;<\/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 om dagen for sjeldne sykdommer&nbsp;<\/a><\/p>\n<p>Du finner flere ressurser og m\u00e5ter \u00e5 \u00f8ke bevisstheten p\u00e5, p\u00e5 nettsiden <a title=\"Spre budskapet\" href=\"https:\/\/www.erdheim-chester.org\/no\/spre-budskapet\/\">Spre ordet<\/a> eller p\u00e5 <a href=\"https:\/\/www.rarediseaseday.org\/article\/get-involved\">nettstedet for Rare Disease Day<\/a>.<\/p>\n<p>Del dagen din med oss i media, ved \u00e5 tagge @ECDGA p\u00e5 Facebook og bruke #ECDawareness p\u00e5 alle mediesider. Vi setter pris p\u00e5 om du ogs\u00e5 kontakter oss for \u00e5 bruke historien, sitatet, bildet og\/eller innlegget ditt p\u00e5 ECDGA sine mediesider. <\/p>\n<p><strong>Les v\u00e5r nyeste pasienthistorie, utgitt i forbindelse med \u00e5rets Rare Disease Day: <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 denne flyeren p\u00e5 mediesidene dine eller via e-post <\/strong><strong>med kontaktene dine!<\/strong><\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-medium wp-image-19547\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300.jpg\" alt=\"\" width=\"232\" height=\"300\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300.jpg 232w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-791x1024.jpg 791w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-768x994.jpg 768w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-1187x1536.jpg 1187w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer.jpg 1545w\" 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 interessegruppen din her for \u00e5 st\u00f8tte deg p\u00e5 din reise! Takk for at du b\u00e6rer ditt sjeldne b\u00e5nd med stolthet! <\/strong><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>HVA ER DAGEN FOR SJELDNE SYKDOMMER? 28. februar 2021 arrangeres den 14. internasjonale dagen for sjeldne sykdommer, koordinert av EURORDIS. P\u00e5 og rundt denne dagen vil hundrevis av pasientorganisasjoner fra [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":61516,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[418,913],"tags":[989,994,993,984,991,988,986,985,987,983,992,982,990],"class_list":["post-61513","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-nyheter","category-forskning","tag-bensmerter","tag-bevissthet","tag-blodkreft","tag-blodsykdom","tag-dagen-for-sjeldne-sykdommer","tag-diabetes-insipidus-no","tag-erdheim-chester-no","tag-fortalervirksomhet","tag-harete-nyre","tag-kreft","tag-sjelden-kreft","tag-sjelden-sykdom","tag-tretthet"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/61513","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=61513"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/61513\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/61516"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=61513"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/categories?post=61513"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/tags?post=61513"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}