{"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":"dag-van-de-zeldzame-ziekten-2021","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nl\/2021-rare-disease-day\/","title":{"rendered":"Dag van de Zeldzame Ziekten 2021"},"content":{"rendered":"<h1><strong>WAT IS DE DAG VAN DE ZELDZAME ZIEKTEN?<\/strong><\/h1>\n<p><em>28 februari 2021<\/em>, is de 14e Internationale Dag van de Zeldzame Ziekten, geco\u00f6rdineerd door EURORDIS. Op en rond deze dag zullen honderden pati\u00ebntenorganisaties uit landen en regio\u2019s over de hele wereld bewustmakingsactiviteiten organiseren.<\/p>\n<p>Ongeveer 300 miljoen mensen (ongeveer 5% van de bevolking) lijden aan een zeldzame ziekte. Van die 5% lijden wereldwijd minder dan 1.000 mensen aan de ziekte van Erdheim-Chester.<\/p>\n<p><strong>Sluit je aan bij de ECD Global Alliance en help mee om zeldzame ziekten onder de aandacht te brengen door je ervaringen met ECD te delen.<\/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\">Offici\u00eble video ter gelegenheid van de Dag van de Zeldzame Ziekten\u00a0<\/a><\/p>\n<p>Find more resources and ways to raise awareness on our <a title=\"Vertel het verder\" href=\"https:\/\/www.erdheim-chester.org\/nl\/vertel-het-verder-2\/\">Vertel het verder<\/a> webpagina of op de <a href=\"https:\/\/www.rarediseaseday.org\/article\/get-involved\">Website van de Dag van de Zeldzame Ziekten<\/a>.<\/p>\n<p>Share your day with us on media, by tagging @ECDGA on Facebook and using #ECDawareness on any media site. We would appreciate it if you would also contact us to use your story, quote, photo, and\/or post on ECDGA&#8217;s media pages.<\/p>\n<p><strong>Lees ons nieuwste pati\u00ebntenverhaal, dat ter gelegenheid van de Dag van de Zeldzame Ziekten van dit jaar is gepubliceerd: <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/A-Spiritual-Journey-Through-ECD-Dean-William.pdf\">Een spirituele reis door ECD<\/a><\/strong><\/p>\n<p><strong>Deel deze flyer op je social media-pagina\u2019s of via e-mail <\/strong><strong>met je contacten!<\/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>Wat je ook doet ter gelegenheid van deze Dag van de Zeldzame Ziekten, je belangenorganisatie staat klaar om je te ondersteunen op je pad! Bedankt dat je je zeldzame lintje met trots draagt!<\/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\/nl\/wp-json\/wp\/v2\/posts\/19549","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/comments?post=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}