{"id":15506,"date":"2026-05-07T07:28:45","date_gmt":"2026-05-07T07:28:45","guid":{"rendered":"https:\/\/akdenizolay.com.tr\/index.php\/2026\/05\/07\/turkiyede-nadir-hastaliklara-yonelik-farkindalik-dayanismayla-gucleniyor\/"},"modified":"2026-05-07T07:28:46","modified_gmt":"2026-05-07T07:28:46","slug":"turkiyede-nadir-hastaliklara-yonelik-farkindalik-dayanismayla-gucleniyor","status":"publish","type":"post","link":"https:\/\/akdenizolay.com.tr\/index.php\/2026\/05\/07\/turkiyede-nadir-hastaliklara-yonelik-farkindalik-dayanismayla-gucleniyor\/","title":{"rendered":"T\u00fcrkiye\u2019de Nadir Hastal\u0131klara Y\u00f6nelik Fark\u0131ndal\u0131k Dayan\u0131\u015fmayla G\u00fc\u00e7leniyor"},"content":{"rendered":"

T\u00fcrkiye, nadir hastal\u0131klara y\u00f6nelik fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak amac\u0131yla d\u00fczenlenen \u00f6nemli bir dayan\u0131\u015fma haftas\u0131na tan\u0131kl\u0131k etti. Plazma kaynakl\u0131 tedavilerde global liderlerden biri olan\u00a0Kedrion Biopharma,\u00a0<\/strong>23 Nisan Ulusal Egemenlik ve \u00c7ocuk Bayram\u0131 ruhunu\u00a0D\u00fcnya Primer \u0130mm\u00fcn Yetmezlik (PIY) Haftas\u0131 (22-29 Nisan)\u00a0<\/strong>ile birle\u015ftirerek kapsaml\u0131 bir sosyal sorumluluk projesini tamamlad\u0131. Ankara\u2019n\u0131n maraton parkurlar\u0131ndan b\u00fcy\u00fck\u015fehirlerdeki hastanelerin inf\u00fczyon odalar\u0131na kadar uzanan kampanya, g\u00fc\u00e7l\u00fc bir mesaj verdi:\u00a0“Yaln\u0131z De\u011filsiniz.”<\/strong><\/p>\n

Ankara\u2019da Umuda Ko\u015fma<\/strong><\/p>\n

Fark\u0131ndal\u0131k zinciri, 19 Nisan\u2019da Ankara\u2019da d\u00fczenlenen Bilkent RunRoll ile ba\u015flad\u0131. Kedrion T\u00fcrkiye ekibi g\u00f6n\u00fcll\u00fcleri,\u00a0“Birlikte Daha Cesur”\u00a0<\/strong>pankart\u0131 alt\u0131nda parkura \u00e7\u0131kt\u0131. Her ad\u0131m, nadir hastal\u0131klarla ya\u015fayan \u00e7ocuklar\u0131n g\u00f6r\u00fcn\u00fcrl\u00fc\u011f\u00fcn\u00fc art\u0131rmaya adand\u0131; fiziksel bir yar\u0131\u015f, toplumsal kabul ve dayan\u0131\u015fma i\u00e7in \u00fclke \u00e7ap\u0131nda bir \u00e7a\u011fr\u0131ya d\u00f6n\u00fc\u015ft\u00fc.<\/p>\n

\u201cPIY\u2019i Fark Et\u201d: Klinik Deneyimi D\u00f6n\u00fc\u015ft\u00fcrmek<\/strong><\/p>\n

Ankara\u2019daki ko\u015fu parkurlar\u0131ndan al\u0131nan enerji, PIY Haftas\u0131 boyunca do\u011frudan klinik ortamlara ta\u015f\u0131nd\u0131. Kedrion T\u00fcrkiye ve Pharminal \u0130la\u00e7 i\u015f birli\u011fiyle \u0130stanbul, \u0130zmir ve Ankara\u2019daki hastanelerde\u00a0“\u0130nf\u00fczyon Odas\u0131 \u015eenlikleri”\u00a0<\/strong>ba\u015flat\u0131ld\u0131.\u00a0<\/strong>Bu etkinlikler Primer \u0130mm\u00fcn Yetmezlik fark\u0131ndal\u0131\u011f\u0131n\u0131 art\u0131rmak ve 23 Nisan bayram sevincini tedavi g\u00f6ren \u00e7ocuklara ula\u015ft\u0131rarak onlar\u0131n kendilerini hasta de\u011fil,\u00a0“ilk \u00f6nce \u00e7ocuk”\u00a0<\/strong>gibi hissetmelerini sa\u011flamak, klinik deneyimlerini d\u00f6n\u00fc\u015ft\u00fcrmek amac\u0131yla tasarland\u0131.<\/p>\n

Erken Tan\u0131n\u0131n G\u00fcc\u00fc: \u201cBirlikte Daha Cesur\u201d<\/strong><\/p>\n

Ankara, \u0130stanbul ve \u0130zmir’deki hastanelerde t\u0131p camias\u0131n\u0131n \u00f6nde gelen uzmanlar\u0131 giri\u015fime kat\u0131larak erken te\u015fhisin, b\u00fct\u00fcnc\u00fcl bak\u0131m ve\u00a0“Birlikte Daha Cesur”\u00a0<\/strong>olma ruhuyla birle\u015fti\u011finde nadir hastal\u0131\u011f\u0131 olan \u00e7ocuklar\u0131n hayat yolculu\u011funu nas\u0131l de\u011fi\u015ftirdi\u011fini vurgulad\u0131lar:<\/p>\n

Prof. Dr. Ay\u015fe Metin – Ankara:\u00a0<\/strong><\/p>\n

“Bug\u00fcn burada hem 23 Nisan haftas\u0131n\u0131 hem de PIY haftas\u0131n\u0131 bir arada kutluyoruz. Do\u011fu\u015ftan ba\u011f\u0131\u015f\u0131kl\u0131k yetmezli\u011fi olan primer imm\u00fcn yetmezlik, nadir hastal\u0131klar kategorisindedir. Aileler bu hastal\u0131\u011f\u0131n en temel \u00f6zelli\u011fi olan s\u0131k ve hafif seyirli enfeksiyonlar\u0131 g\u00f6zden ka\u00e7\u0131rabilirler.\u00a0<\/p>\n

22-29 Nisan haftas\u0131 bu alanda fark\u0131ndal\u0131\u011f\u0131n art\u0131r\u0131lmas\u0131n\u0131n hedeflendi\u011fi \u00f6nemli bir hafta. Hastalar\u0131m\u0131z bizim i\u00e7in \u00e7ok k\u0131ymetli; bir an \u00f6nce te\u015fhis al\u0131p tedavilerine kavu\u015fmalar\u0131n\u0131 istiyoruz. Bu hastal\u0131kta kullan\u0131lan imm\u00fcnoglobulin tedavisi sayesinde \u00e7ocuklar\u0131m\u0131z d\u00fcnyadaki \u00a0hastal\u0131klara kar\u015f\u0131 korunuyor veya hastal\u0131klar\u0131 hafif atlat\u0131yorlar. Bu vesileyle aram\u0131zda bulunan Kedrion Biopharma ve Pharminal \u0130la\u00e7 yetkililerine destekleri i\u00e7in te\u015fekk\u00fcr ediyoruz.”<\/p>\n

Prof. Dr. Ferah Genel – \u0130zmir:\u00a0<\/strong>\u00a0<\/p>\n

“Biz bu duruma\u00a0‘nadir’\u00a0<\/strong>diyoruz ama misyonumuz onu\u00a0‘bilinir’<\/strong>\u00a0k\u0131lmak. Bug\u00fcn buradaki \u00e7ocuklar\u0131m\u0131za sesleniyorum: Sizler \u015fansl\u0131 olanlars\u0131n\u0131z \u00e7\u00fcnk\u00fc tan\u0131 ald\u0131n\u0131z ve do\u011fru tedaviye ula\u015ft\u0131n\u0131z. Hekimleriniz yan\u0131n\u0131zda; biz birlikte daha cesur ve daha g\u00fc\u00e7l\u00fcy\u00fcz.”<\/p>\n

Prof. Dr. G\u00fczide Aksu – \u0130zmir:\u00a0<\/strong><\/p>\n

“Erken te\u015fhis sadece t\u0131bbi bir d\u00f6n\u00fcm noktas\u0131 de\u011fil; bir \u00e7ocu\u011fun ya\u015fam kalitesini tamamen yeniden yazan bir g\u00fc\u00e7t\u00fcr. Do\u011fru tedavi standartlar\u0131yla, \u00e7ocuklar\u0131m\u0131z\u0131n hayata inan\u0131lmaz bir diren\u00e7le tutunmalar\u0131na tan\u0131k oluyoruz.”<\/p>\n

Prof. Dr. Neslihan Karaca – \u0130zmir\u00a0<\/strong>(Nadir hastal\u0131klar\u0131n k\u00fcresel sembol\u00fc olan \u2018zebra\u2019 metaforuna at\u0131fta bulunarak):\u00a0<\/p>\n

“Bu \u00f6zel \u00e7ocuklar do\u011fru tan\u0131ya ve tedaviye ula\u015ft\u0131klar\u0131nda art\u0131k bir kenarda beklemiyorlar. Hayat\u0131n i\u00e7inde d\u00f6rtnala ko\u015fuyor ve\u00a0‘Birlikte Daha Cesur’\u00a0<\/strong>oldu\u011fumuzu kan\u0131tl\u0131yorlar.” dedi.<\/p>\n

G\u00f6r\u00fcnmeyeni G\u00f6r\u00fcn\u00fcr K\u0131lmak: \u201cNadir Ama Ger\u00e7ek\u201d<\/strong><\/p>\n

Kedrion\u2019un k\u00fcresel\u00a0\u201cRare But Real\u201d\u00a0<\/strong>(Nadir Ama Ger\u00e7ek) platformuna dayanan bu giri\u015fim, ger\u00e7ek hikayelerin ve toplumsal kapsay\u0131c\u0131l\u0131\u011f\u0131n iyile\u015ftirici g\u00fcc\u00fcne odaklan\u0131yor. Yetkililer misyonu \u015fu s\u00f6zlerle \u00f6zetledi:\u00a0\u201cPIY\u2019i fark etmek hayat kurtar\u0131r. Bizim i\u00e7in her \u00e7ocuk bir kahramand\u0131r ve her kahraman g\u00f6r\u00fclmeyi hak eder.\u201d\u00a0<\/strong><\/p>\n

TR-\u0130-042026-003<\/p>\n

Kedrion Biopharma Hakk\u0131nda<\/strong><\/p>\n

Bilimin \u0130nsanl\u0131kla Bulu\u015ftu\u011fu Nokta<\/strong><\/p>\n

Kedrion Biopharma<\/b>, nadir ve ultra nadir hastal\u0131klarla m\u00fccadele eden bireylerin ya\u015fam kalitesini art\u0131rmaya odaklanm\u0131\u015f, plazma kaynakl\u0131 tedavilerde global bir sekt\u00f6rel g\u00fc\u00e7t\u00fcr. D\u00fcnya \u00e7ap\u0131nda\u00a0100\u2019\u00fc a\u015fk\u0131n \u00fclkede 5.400 ki\u015filik dev kadrosuyla<\/b>\u00a0faaliyet g\u00f6steren \u015firket; bilimin g\u00fcc\u00fcn\u00fc insani de\u011ferlerle harmanlayarak yenilik\u00e7i \u00e7\u00f6z\u00fcmleri en kritik noktalara ula\u015ft\u0131r\u0131yor. T\u00fcrkiye operasyonlar\u0131nda ise bu vizyonu;\u00a0hasta odakl\u0131 bir de\u011fer zinciri<\/b>\u00a0ve stratejik bilimsel i\u015f birlikleri \u00fczerine kurguluyor. \u015eirket\u00a0“Rare but Real”, nadir hastal\u0131klar toplulu\u011fundan hikayelere g\u00f6r\u00fcn\u00fcrl\u00fck kazand\u0131ran uzun vadeli bir fark\u0131ndal\u0131k platformu arac\u0131l\u0131\u011f\u0131yla toplumsal ba\u011fl\u0131l\u0131\u011f\u0131n\u0131 yans\u0131tmaktad\u0131r.\u00a0Sosyal sorumluluk projeleriyle nadir hastal\u0131klar toplulu\u011funun sesi olmay\u0131 s\u00fcrd\u00fcren Kedrion, toplumsal fark\u0131ndal\u0131kta \u00f6nc\u00fc bir rol \u00fcstleniyor.<\/p>\n

\u00a0<\/p>\n

Kaynak: (BYZHA) Beyaz Haber Ajans\u0131<\/p>\n","protected":false},"excerpt":{"rendered":"

T\u00fcrkiye, nadir hastal\u0131klara y\u00f6nelik fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak amac\u0131yla d\u00fczenlenen \u00f6nemli bir dayan\u0131\u015fma haftas\u0131na tan\u0131kl\u0131k etti.<\/p>\n","protected":false},"author":1,"featured_media":15507,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[23],"tags":[],"class_list":["post-15506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saglik"],"_links":{"self":[{"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/15506","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/comments?post=15506"}],"version-history":[{"count":1,"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/15506\/revisions"}],"predecessor-version":[{"id":15508,"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/15506\/revisions\/15508"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/media\/15507"}],"wp:attachment":[{"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/media?parent=15506"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/categories?post=15506"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/akdenizolay.com.tr\/index.php\/wp-json\/wp\/v2\/tags?post=15506"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}