{"id":291,"date":"2023-02-01T12:00:27","date_gmt":"2023-02-01T09:00:27","guid":{"rendered":"https:\/\/dorahealth.com\/?p=291"},"modified":"2025-11-06T01:19:23","modified_gmt":"2025-11-05T22:19:23","slug":"nadir-hastaliklar-gunu-28-subat","status":"publish","type":"post","link":"https:\/\/dorahealth.com\/tr\/2023\/02\/nadir-hastaliklar-gunu-28-subat\/","title":{"rendered":"Nadir Hastal\u0131klar G\u00fcn\u00fc, 28 \u015eubat"},"content":{"rendered":"

Nadir Hastal\u0131klar G\u00fcn\u00fc<\/strong>, \u015eubat Ay\u0131\u2019n\u0131n son g\u00fcn\u00fc d\u00fczenlenen, nadir hastal\u0131klar konusunda fark\u0131ndal\u0131k yaratmay\u0131, nadir bireylerin tedaviye eri\u015fimlerini kolayla\u015ft\u0131rmay\u0131 hedefleyen g\u00fcnd\u00fcr. Avrupa Nadir Hastal\u0131klar Organizasyonu, 2008 y\u0131l\u0131nda nadir hastal\u0131klara dikkat \u00e7ekmek amac\u0131yla her d\u00f6rt y\u0131lda bir denk gelen nadir bir tarihi; 29 \u015eubat\u2019\u0131 fark\u0131ndal\u0131k g\u00fcn\u00fc olarak ilan etti. O g\u00fcnden beri \u015eubat Ay\u0131\u2019n\u0131n son g\u00fcn\u00fc \u201cD\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc\u201d olarak kabul edilmektedir.<\/p>\n

Nadir Hastal\u0131k Nedir?<\/h2>\n

Nadir hastal\u0131klar, Avrupa ve di\u011fer geli\u015fmi\u015f \u00fclkelerdeki tan\u0131m\u0131yla; 2000\u2019de 1 ya da daha az s\u0131kl\u0131kta g\u00f6r\u00fclen, \u00e7o\u011fu ilerleyici, metabolik, kronik ve baz\u0131lar\u0131 \u00f6l\u00fcmc\u00fcl olabilen hastal\u0131klard\u0131r.
\n7000\u2019den fazla nadir hastal\u0131k bulundu\u011fu belirtilmektedir ve bu hastal\u0131klar\u0131n % 80’i genetik ge\u00e7i\u015flidir.
\nHastalar\u0131n yakla\u015f\u0131k % 50\u2019sini \u00e7ocuklar olu\u015fturmaktad\u0131r.<\/p>\n

Nadir hastal\u0131\u011fa sahip \u00e7ocuklar\u0131n % 30\u2019u 5 ya\u015f\u0131n\u0131 g\u00f6rememektedir. Bu durumun en temel sebebi; nadir hastal\u0131klar\u0131n % 95\u2019inin tedavisinin olmamas\u0131d\u0131r.
\nT\u00fcrkiye\u2019de yakla\u015f\u0131k 5-6 milyon, d\u00fcnyada yakla\u015f\u0131k 350 milyon ki\u015fi nadir bir hastal\u0131\u011fa sahiptir.<\/p>\n

Her bir hastal\u0131\u011f\u0131n kendine ait bir \u00f6zelli\u011fi vard\u0131r. Bu \u00f6zelli\u011fi dolay\u0131s\u0131yla \u00f6zel bak\u0131m ve tedavi y\u00f6ntemlerine, ila\u00e7lara, sarf malzemelere, \u00f6zel besinlere ve t\u0131bbi cihazlara gereksinim duyulmaktad\u0131r.
\nHastal\u0131klar nadir olsa da ortaya \u00e7\u0131kan sonu\u00e7lar hem hasta olan birey, hem ailesi, hem de toplum a\u00e7\u0131s\u0131ndan \u00e7ok a\u011f\u0131r olmaktad\u0131r.<\/p>\n

Nadir hastal\u0131klar\u0131n \u00f6nlenmesindeki en \u00f6nemli yakla\u015f\u0131m;
\n\u00dclkemizde akraba evliliklerinin yap\u0131lmamas\u0131 i\u00e7in \u00e7aba g\u00f6sterilmesidir. Nadir hastal\u0131klar\u0131n bir\u00e7o\u011fu, genetik ge\u00e7i\u015fli oldu\u011fu i\u00e7in, akraba evlili\u011fi riski \u015fiddetle artt\u0131rmaktad\u0131r.<\/p>\n

Nadir hastal\u0131klar ile ilgili zorluklar nelerdir?<\/h2>\n

Toplum genelinde bilinmeseler de, nadir bireyler, aileleri ve sosyal \u00e7evreleri i\u00e7in \u00e7ok \u00f6nemlidir. Nadir bireylere zaman\u0131nda ve do\u011fru tan\u0131 konulmas\u0131, tedaviye h\u0131zl\u0131 ve tam ula\u015fabilmeleri, sosyal ve finansal y\u00fcklerinin azalt\u0131lmas\u0131 m\u00fccadeledeki en \u00f6nemli basamaklard\u0131r.
\nToplumdaki fark\u0131ndal\u0131\u011f\u0131n artmas\u0131, disiplinler aras\u0131 i\u015fbirli\u011fi ile bilimsel \u00e7al\u0131\u015fmalar\u0131n \u00e7o\u011falmas\u0131 bu zorluklar\u0131n a\u015f\u0131lmas\u0131nda b\u00fcy\u00fck katk\u0131 sa\u011flayacakt\u0131r.<\/p>\n

Referanslar:<\/h3>\n

https:\/\/www.rarediseaseday.org\/<\/a><\/p>\n

https:\/\/kasder.org.tr\/28-subat-dunya-nadir-hastaliklar-gunu-2021\/<\/a><\/p>\n

https:\/\/www.nadirhastaliklaragi.org.tr\/duyuru\/101\/28-subat-nadir-hastaliklar-gunu<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Nadir Hastal\u0131klar G\u00fcn\u00fc, \u015eubat Ay\u0131\u2019n\u0131n son g\u00fcn\u00fc d\u00fczenlenen, nadir hastal\u0131klar konusunda fark\u0131ndal\u0131k yaratmay\u0131, nadir bireylerin tedaviye eri\u015fimlerini kolayla\u015ft\u0131rmay\u0131 hedefleyen g\u00fcnd\u00fcr. Avrupa Nadir Hastal\u0131klar Organizasyonu, 2008 y\u0131l\u0131nda nadir hastal\u0131klara dikkat \u00e7ekmek amac\u0131yla her d\u00f6rt y\u0131lda bir denk gelen nadir bir tarihi; 29 \u015eubat\u2019\u0131 fark\u0131ndal\u0131k g\u00fcn\u00fc olarak ilan etti. O g\u00fcnden beri \u015eubat Ay\u0131\u2019n\u0131n son g\u00fcn\u00fc \u201cD\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc\u201d olarak kabul … <\/p>\n

Read More<\/a><\/div>\n","protected":false},"author":2,"featured_media":293,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"rs_blank_template":"","rs_page_bg_color":"","slide_template_v7":"","footnotes":""},"categories":[1,4],"tags":[],"class_list":["post-291","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ayin-yazisi","category-this-month"],"_links":{"self":[{"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/posts\/291","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/comments?post=291"}],"version-history":[{"count":1,"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/posts\/291\/revisions"}],"predecessor-version":[{"id":292,"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/posts\/291\/revisions\/292"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/media\/293"}],"wp:attachment":[{"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/media?parent=291"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/categories?post=291"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dorahealth.com\/tr\/wp-json\/wp\/v2\/tags?post=291"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}