{"id":931,"date":"2022-03-31T16:35:10","date_gmt":"2022-03-31T13:35:10","guid":{"rendered":"https:\/\/www.kliinikum.ee\/harvikhaigused\/?p=931"},"modified":"2022-03-31T16:35:13","modified_gmt":"2022-03-31T13:35:13","slug":"eesti-puuetega-inimeste-koda-juhib-videoklipiga-tahelepanu-harvikhaigustega-seotud-valjakutsetele","status":"publish","type":"post","link":"https:\/\/www.kliinikum.ee\/harvikhaigused\/eesti-puuetega-inimeste-koda-juhib-videoklipiga-tahelepanu-harvikhaigustega-seotud-valjakutsetele\/","title":{"rendered":"Eesti Puuetega Inimeste Koda juhib videoklipiga t\u00e4helepanu harvikhaigustega seotud v\u00e4ljakutsetele"},"content":{"rendered":"\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube\"><div style=\"display: contents;\" >\n\n<div data-fullscreen=\"disabled\" data-mode=\"normal\" data-oembed=\"1\" data-provider=\"youtube\" data-reset-after-played id=\"arve-youtube-rmxdww2liss\" class=\"arve\">\n\t<div class=\"arve-inner\">\n\t\t<div style=\"aspect-ratio:585\/329\" class=\"arve-embed arve-embed--has-aspect-ratio\">\n\t\t\t<div class=\"arve-ar\" style=\"padding-top:56.239316%\"><\/div>\n\t\t\t<iframe allow=\"accelerometer &apos;none&apos;;autoplay &apos;none&apos;;bluetooth &apos;none&apos;;browsing-topics &apos;none&apos;;camera &apos;none&apos;;clipboard-read &apos;none&apos;;clipboard-write;display-capture &apos;none&apos;;encrypted-media &apos;none&apos;;gamepad &apos;none&apos;;geolocation &apos;none&apos;;gyroscope &apos;none&apos;;hid &apos;none&apos;;identity-credentials-get &apos;none&apos;;idle-detection &apos;none&apos;;keyboard-map &apos;none&apos;;local-fonts;magnetometer &apos;none&apos;;microphone &apos;none&apos;;midi &apos;none&apos;;otp-credentials &apos;none&apos;;payment &apos;none&apos;;picture-in-picture;publickey-credentials-create &apos;none&apos;;publickey-credentials-get &apos;none&apos;;screen-wake-lock &apos;none&apos;;serial &apos;none&apos;;summarizer &apos;none&apos;;sync-xhr;usb &apos;none&apos;;web-share;window-management &apos;none&apos;;xr-spatial-tracking &apos;none&apos;;\" allowfullscreen=\"\" class=\"arve-iframe fitvidsignore\" credentialless data-arve=\"arve-youtube-rmxdww2liss\" data-lenis-prevent=\"\" data-src-no-ap=\"https:\/\/www.youtube-nocookie.com\/embed\/rmxDwW2liSs?feature=oembed&amp;iv_load_policy=3&amp;modestbranding=1&amp;rel=0&amp;autohide=1&amp;playsinline=0&amp;autoplay=0&amp;enablejsapi=1\" frameborder=\"0\" height=\"0\" loading=\"lazy\" name=\"\" referrerpolicy=\"strict-origin-when-cross-origin\" sandbox=\"allow-scripts allow-same-origin allow-presentation allow-popups allow-popups-to-escape-sandbox\" scrolling=\"no\" src=\"https:\/\/www.youtube-nocookie.com\/embed\/rmxDwW2liSs?feature=oembed&#038;iv_load_policy=3&#038;modestbranding=1&#038;rel=0&#038;autohide=1&#038;playsinline=0&#038;autoplay=0&#038;enablejsapi=1\" title=\"Harvikhaiguste p\u00e4ev 2022\" width=\"0\"><\/iframe>\n\t\t\t\n\t\t<\/div>\n\t\t\n\t<\/div>\n\t\n\t\n\t<script type=\"application\/ld+json\">{\"@context\":\"http:\\\/\\\/schema.org\\\/\",\"@id\":\"https:\\\/\\\/www.kliinikum.ee\\\/harvikhaigused\\\/eesti-puuetega-inimeste-koda-juhib-videoklipiga-tahelepanu-harvikhaigustega-seotud-valjakutsetele\\\/#arve-youtube-rmxdww2liss\",\"@type\":\"VideoObject\",\"author\":{\"@type\":\"Organization\",\"name\":\"Eesti Puuetega Inimeste Koda\"},\"embedURL\":\"https:\\\/\\\/www.youtube-nocookie.com\\\/embed\\\/rmxDwW2liSs?feature=oembed&iv_load_policy=3&modestbranding=1&rel=0&autohide=1&playsinline=0&autoplay=0&enablejsapi=1\",\"name\":\"Harvikhaiguste p\\u00e4ev 2022\",\"thumbnailUrl\":\"https:\\\/\\\/i.ytimg.com\\\/vi\\\/rmxDwW2liSs\\\/hqdefault.jpg\",\"uploadDate\":\"2022-02-28T09:34:17Z\",\"description\":\"Harvikhaiguste p\\u00e4ev \\u2013 p\\u00e4ev, toetamaks inimesi ja peresid, kelle elu m\\u00f5jutab haruldane haigus.\\n\\nHarvikhaigused \\u2013 kellel? Miks? Kas ravi on olemas? Kust n\\u00f5u saab? Kuidas toeks olla?\\n\\n- Harvikhaiguste p\\u00e4eva t\\u00e4histatakse veebruari viimasel p\\u00e4eval.\\n\\n- Haruldasi haiguseid on t\\u00e4naseks p\\u00e4evaks avastatud juba ligi 8000. Kuid ravi on olemas vaid ca viiele protsendile haruldastest haigustest.\\n\\n- Uusi harvaesinevaid haiguseid kirjeldatakse igal aastal v\\u00e4hemalt 250, seega haiguste nimekiri t\\u00e4ieneb pidevalt. Samamoodi lisandub igal aastal haruldase haiguse diagnoosi saanud inimesi.\\n\\n- Haruldase haigused on k\\u00fcll haruldased, kuid maailmas on neist puudutatud sajad miljonid inimesed. Eestis on enda v\\u00f5i l\\u00e4hedase haruldasest haigusest m\\u00f5jutatud ca 100 000 inimest. \\n\\n- Enamik harvikhaigusi ehk umbes 80% on geneetilise p\\u00e4ritoluga, kuid esineb ka n\\u00e4iteks haruldasi kasvajaid ja keskkonnatekkelisi haiguseid.\\n\\n- Haruldasi haiguseid iseloomustab v\\u00e4ga v\\u00e4ike esinemissagedus. Harvikhaiguseks peetakse haigust, mille esinemissagedus on 5 juhtu 10000 inimese kohta.\\n\\n- Samas on haruldasi haiguseid, mida on tuvastatud \\u00fchel miljonist ja isegi \\u00fchel miljardist. \\n\\n- K\\u00f5ik eelnev t\\u00e4hendab, et haruldase haigusega inimesed ja nende pereliikmed on sageli \\u00fcksi, teadmatuses, tihtilugu ei ole ka arstidel rohkem informatsiooni jagada ning raviv\\u00f5imalused on ahtad, puuduvad \\u00fcldse v\\u00f5i on k\\u00e4ttesaamatult kallid. \\n\\n-  avas Eestis uksed Tartu \\u00dclikooli Kliinikumi koosseisu kuuluv Harvikhaiguste Kompetentsi Keskus. Kompetentsi Keskus:\\n\\n: tegeleb harvikhaiguste diagnoosimise ja raviga;\\n: aitab kaasa teadust\\u00f6\\u00f6le, et s\\u00fcvendada teadmisi, diagnoosimisv\\u00f5imalusi, t\\u00f5hustada hooldust ja ravi\\n: pakub konsultatsiooni ja n\\u00f5ustamist harvikhaigusega inimesele ja tema perele.\\n\\n- Eesti Puuetega Inimeste Koda seisab haruldase haigusega inimeste ja nende perede \\u00f5iguste eest. P\\u00f6\\u00f6rame t\\u00e4helepanu v\\u00e4ljakutsetele, millega haiged ja nende pered silmitsi seisavad. Haruldaste haigustega inimesed ja nende pered peavad saama teistega v\\u00f5rdselt \\u00fchiskonnaelus osaleda. Iga\\u00fchel on \\u00f5igus eneseteostusele, haridusele, sotsiaalteenustele, \\u00f5iglasele kohtlemisele tervishoius\\u00fcsteemis ja ligip\\u00e4\\u00e4setavale ravile.  \\n\\n\\n- Teadlikkuse t\\u00f5stmise, erinevuste tunnustamise ja toetava suhtumisega aitame kaasa \\u00fchiskonna arenemisele, kus v\\u00e4\\u00e4rikas elu on tagatud k\\u00f5ikidele ja keegi ei j\\u00e4\\u00e4 oma tervisemurega \\u00fcksi. \\n\\n- K\\u00f5ik haigused on ebameeldivad, aga haruldase haiguse p\\u00f5demine on raske nii haigele endale kui pereliikmetele. M\\u00e4rka, hooli ja hoia haruldase haigusega inimest ja tema l\\u00e4hedasi!\"}<\/script>\n\t\n<\/div>\n<\/div><\/figure>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"advgb_blocks_editor_width":"","advgb_blocks_columns_visual_guide":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[1],"class_list":["post-931","post","type-post","status-publish","format-standard","hentry","category-uudised"],"acf":[],"featured_image_src":null,"author_info":{"display_name":"Kulli.Kevvai@kliinikum.ee","author_link":"https:\/\/www.kliinikum.ee\/harvikhaigused\/author\/kulli-kevvaikliinikum-ee\/"},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Eesti Puuetega Inimeste Koda juhib videoklipiga t\u00e4helepanu harvikhaigustega seotud v\u00e4ljakutsetele - 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