{"id":302,"date":"2020-01-18T19:40:48","date_gmt":"2020-01-18T16:40:48","guid":{"rendered":"http:\/\/hifoder.org\/?p=166"},"modified":"2020-01-18T19:40:48","modified_gmt":"2020-01-18T16:40:48","slug":"28-subat-dunya-nadir-hastaliklar-gunu","status":"publish","type":"post","link":"https:\/\/hifoder.org\/en\/28-subat-dunya-nadir-hastaliklar-gunu\/","title":{"rendered":"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>T\u00fcm d\u00fcnyada nadir hastal\u0131klar konusunda toplumda ve sa\u011fl\u0131k sekt\u00f6r\u00fcnde fark\u0131ndal\u0131k ve bilgi d\u00fczeyini artt\u0131rmak, bu hastalar\u0131n sorunlar\u0131na toplum ve karar verici otoriteler nezdinde dikkat \u00e7ekmek i\u00e7in her y\u0131l \u015eubat ay\u0131n\u0131n son g\u00fcn\u00fc \u201cNadir Hastal\u0131klar G\u00fcn\u00fc\u201d olarak kutlanmaktad\u0131r.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Avrupa Birli\u011fi taraf\u0131ndan 2.000 ki\u015fiden 1 ki\u015fiyi veya ABD\u2019de 1\/200.000 ki\u015fiden az\u0131n\u0131 etkileyen hastal\u0131klar nadir hastal\u0131k olarak kabul ediliyor. T\u00fcm d\u00fcnyada 250-350insan\u0131 etkileyen yakla\u015f\u0131k 6.000-8.000 aras\u0131nda nadir hastal\u0131k bulunuyor.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ge\u00e7mi\u015fte nadir hastal\u0131klar \u201cyetim hastal\u0131klar\u201d olarak adland\u0131r\u0131lmaktayd\u0131. Bunun sebebi nadir rastlanan bu grup hastal\u0131klarla ilgili tan\u0131, tetkik ve tedavi olanaklar\u0131n\u0131n s\u0131n\u0131rl\u0131 olmas\u0131 idi. \u00d6yle ki bu alandaki sa\u011fl\u0131k profesyonellerinin say\u0131s\u0131 olduk\u00e7a az ve ila\u00e7 end\u00fcstrisi kar oran\u0131 d\u00fc\u015f\u00fck oldu\u011fundan&nbsp; AR-GE \u00e7al\u0131\u015fmalar\u0131na \u00f6nem vermemekteydi. Bu hastal\u0131klar da kullan\u0131lan &nbsp;ila\u00e7lar da \u201cyetim ila\u00e7lar\u201d olarak adland\u0131r\u0131lmaktayd\u0131. Sa\u011fl\u0131k profesyonelleri ile birlikte hastalar\u0131n \u00e7abalar\u0131yla kurulan dernekler, farkl\u0131 \u00fclkelerde bu hastal\u0131klar\u0131n fark\u0131ndal\u0131\u011f\u0131n\u0131n artmas\u0131n\u0131 sa\u011flad\u0131. G\u00fcn\u00fcm\u00fczde uluslararas\u0131 d\u00fczeyde faaliyet g\u00f6steren, bu nadir hastal\u0131klar\u0131n tan\u0131, tetkik ve tedavisine h\u0131z kazand\u0131ran, uluslararas\u0131 pek \u00e7ok&nbsp; hasta derne\u011fi mevcuttur.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Y\u0131llard\u0131r kullan\u0131lmakta olan ICD-10 ad\u0131 verilen Uluslararas\u0131 Hastal\u0131klar\u0131 S\u0131n\u0131fland\u0131rma K\u0131lavuzunda nadir hastal\u0131klar\u0131n tan\u0131mlar\u0131 bulunmazken 2017 y\u0131l\u0131nda, bu y\u0131l, uygulamaya girmesi beklenen ICD-11 k\u0131lavuzunda, nadir hematolojik hastal\u0131klarda listelenmi\u015ftir. Bu hastal\u0131klara y\u00f6nelik ila\u00e7 AR-GE \u00e7al\u0131\u015fmalar\u0131 ivme kazanm\u0131\u015f ve h\u00fck\u00fcmetlerinde yard\u0131m\u0131yla bu ila\u00e7lar ula\u015f\u0131labilir hale gelmi\u015ftir.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nadir g\u00f6r\u00fclen kan hastal\u0131klar\u0131 sa\u011fl\u0131k \u00e7al\u0131\u015fanlar\u0131 aras\u0131nda akla gelip erken tan\u0131 ve tedavi uygulanmad\u0131\u011f\u0131 taktirde kronik, ilerleyici, ve hayat\u0131 tehdit edici durumla sonlanabilir. Bu nedenle T\u00fcrk Hematoloji Derne\u011fi&nbsp; kendi&nbsp; b\u00fcnyesinde Prof. Dr. Sema Karaku\u015f ba\u015fkanl\u0131\u011f\u0131nda \u201cNadir Hematolojik Hastal\u0131klar&nbsp; Bilimsel Alt Komitesi (BAK) \u201d kurmu\u015ftur. Nadir Hematolojik Hastal\u0131klar BAK farkl\u0131 illerde hematoloji uzmanlar\u0131na bilgilendirme toplant\u0131lar\u0131 yaparak fark\u0131ndal\u0131klar\u0131n\u0131 artt\u0131rmakta ve g\u00fcncel bilimsel verilerle hekimleri ayd\u0131nlatmaktad\u0131r.<strong><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u00c7o\u011funlukla genetik nedenlerden kaynaklanan bu hastal\u0131klar\u0131n yayg\u0131n g\u00f6r\u00fcld\u00fc\u011f\u00fc \u00fclkeler aras\u0131nda T\u00fcrkiye\u2019 de yer al\u0131yor.&nbsp;\u00dclkemizde hala her 5 evlilikten birinin akraba evlili\u011fi olmas\u0131 nedeniyle genetik ge\u00e7i\u015fli ve \u00e7ekinik olarak kal\u0131t\u0131lan bir\u00e7ok nadir hastal\u0131k&nbsp;Avrupa&nbsp;ve&nbsp;ABD\u2019den daha s\u0131k g\u00f6r\u00fclmektedir. \u00dclkemizde yakla\u015f\u0131k 6-7&nbsp; milyon insan\u0131n nadir hastal\u0131klara sahip oldu\u011funu biliyoruz.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nadir g\u00f6r\u00fclen ve kan\u0131n p\u0131ht\u0131la\u015fmas\u0131nda g\u00f6rev alan fakt\u00f6rlerin eksiklikleri hayat\u0131 tehdit eden kanamalara yol a\u00e7abilir.<br><br> <strong>Prof. Dr. Ahmet Muzaffer Demir<\/strong><br><strong> T\u00fcrk Hematoloji Derne\u011fi Ba\u015fkan\u0131  <\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>T\u00fcm d\u00fcnyada nadir hastal\u0131klar konusunda toplumda ve sa\u011fl\u0131k sekt\u00f6r\u00fcnde fark\u0131ndal\u0131k ve bilgi d\u00fczeyini artt\u0131rmak, bu hastalar\u0131n sorunlar\u0131na toplum ve karar verici otoriteler nezdinde dikkat \u00e7ekmek i\u00e7in her y\u0131l \u015eubat ay\u0131n\u0131n son g\u00fcn\u00fc \u201cNadir Hastal\u0131klar G\u00fcn\u00fc\u201d olarak kutlanmaktad\u0131r. Avrupa Birli\u011fi taraf\u0131ndan 2.000 ki\u015fiden 1 ki\u015fiyi veya ABD\u2019de 1\/200.000 ki\u015fiden az\u0131n\u0131 etkileyen hastal\u0131klar nadir hastal\u0131k olarak kabul [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":961,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[7,5],"tags":[],"class_list":["post-302","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-duyurular","category-haberler"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc - Hifo-DER<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hifoder.org\/en\/28-subat-dunya-nadir-hastaliklar-gunu\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc - Hifo-DER\" \/>\n<meta property=\"og:description\" content=\"T\u00fcm d\u00fcnyada nadir hastal\u0131klar konusunda toplumda ve sa\u011fl\u0131k sekt\u00f6r\u00fcnde fark\u0131ndal\u0131k ve bilgi d\u00fczeyini artt\u0131rmak, bu hastalar\u0131n sorunlar\u0131na toplum ve karar verici otoriteler nezdinde dikkat \u00e7ekmek i\u00e7in her y\u0131l \u015eubat ay\u0131n\u0131n son g\u00fcn\u00fc \u201cNadir Hastal\u0131klar G\u00fcn\u00fc\u201d olarak kutlanmaktad\u0131r. Avrupa Birli\u011fi taraf\u0131ndan 2.000 ki\u015fiden 1 ki\u015fiyi veya ABD\u2019de 1\/200.000 ki\u015fiden az\u0131n\u0131 etkileyen hastal\u0131klar nadir hastal\u0131k olarak kabul [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/hifoder.org\/en\/28-subat-dunya-nadir-hastaliklar-gunu\/\" \/>\n<meta property=\"og:site_name\" content=\"Hifo-DER\" \/>\n<meta property=\"article:published_time\" content=\"2020-01-18T16:40:48+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/hifoder.org\/wp-content\/uploads\/2020\/01\/hands-love-e1579366751792.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"612\" \/>\n\t<meta property=\"og:image:height\" content=\"286\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/hifoder.org\\\/28-subat-dunya-nadir-hastaliklar-gunu\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/hifoder.org\\\/28-subat-dunya-nadir-hastaliklar-gunu\\\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\\\/\\\/hifoder.org\\\/#\\\/schema\\\/person\\\/64fa38481ae7ed8e20760e4aafc9e3b2\"},\"headline\":\"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc\",\"datePublished\":\"2020-01-18T16:40:48+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/hifoder.org\\\/28-subat-dunya-nadir-hastaliklar-gunu\\\/\"},\"wordCount\":517,\"image\":{\"@id\":\"https:\\\/\\\/hifoder.org\\\/28-subat-dunya-nadir-hastaliklar-gunu\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/hifoder.org\\\/wp-content\\\/uploads\\\/2020\\\/01\\\/hands-love-e1579366751792.jpg\",\"articleSection\":[\"Duyurular\",\"Haberler\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/hifoder.org\\\/28-subat-dunya-nadir-hastaliklar-gunu\\\/\",\"url\":\"https:\\\/\\\/hifoder.org\\\/28-subat-dunya-nadir-hastaliklar-gunu\\\/\",\"name\":\"28 \u015eubat D\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc - 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