{"id":2514,"date":"2023-11-30T15:47:09","date_gmt":"2023-11-30T12:47:09","guid":{"rendered":"https:\/\/pharmaworlddergi.com\/?p=2514"},"modified":"2023-12-01T11:46:57","modified_gmt":"2023-12-01T08:46:57","slug":"turkiyede-nadir-hastaliklar-raporunun-bulgularikamuoyuyla-paylasildi","status":"publish","type":"post","link":"https:\/\/pharmaworlddergi.com\/turkiyede-nadir-hastaliklar-raporunun-bulgularikamuoyuyla-paylasildi\/","title":{"rendered":"T\u00fcrkiye\u2019de Nadir Hastal\u0131klar Raporunun Bulgular\u0131 Kamuoyuyla Payla\u015f\u0131ld\u0131"},"content":{"rendered":"\n<p>Ara\u015ft\u0131rmac\u0131 \u0130la\u00e7 Firmalar\u0131 Derne\u011fi (AIFD) giri\u015fimiyle haz\u0131rlanan \u2018T\u00fcrkiye\u2019de Nadir Hastal\u0131klar\u2019 raporu, \u00fclkemizde 5 milyonun \u00fczerinde ki\u015fiyi etkileyen nadir hastal\u0131klar i\u00e7in mevcut durum hakk\u0131nda saptamalar yaparken bir yandan da ulusal politika, altyap\u0131 ve Ar-Ge konular\u0131nda \u00f6neriler sunuyor.<\/p>\n\n\n\n<p><br>20 y\u0131ld\u0131r T\u00fcrkiye\u2019deki hastalar\u0131n yenilik\u00e7i ila\u00e7 ve tedavilere eri\u015fimi i\u00e7in \u00fcyeleri ile birlikte \u00e7al\u0131\u015fan Ara\u015ft\u0131rmac\u0131 \u0130la\u00e7 Firmalar\u0131 Derne\u011fi\u2019nin (AIFD) giri\u015fimiyle, ara\u015ft\u0131rma \u015firketi IQVIA taraf\u0131ndan haz\u0131rlanan \u2018T\u00fcrkiye\u2019de Nadir Hastal\u0131klar\u2019 raporunun bulgular\u0131, 30 Kas\u0131m\u2019da Ankara\u2019da d\u00fczenlenen kamunun yo\u011fun kat\u0131l\u0131m g\u00f6sterdi\u011fi toplant\u0131da kamuoyuyla payla\u015f\u0131ld\u0131. Nadir hastal\u0131klarla m\u00fccadeleyi, i\u015f birlikleriyle g\u00fc\u00e7lendirmeyi hedefleyen AIFD, 6 \u00fcyesinin deste\u011fiyle haz\u0131rlanan raporun nadir hastal\u0131klar alan\u0131ndaki \u00e7al\u0131\u015fmalar i\u00e7in bir referans kayna\u011f\u0131 olmas\u0131n\u0131 hedefliyor.<\/p>\n\n\n\n<p><br>T\u00fcrkiye\u2019de nadir hastal\u0131klar \u00f6zelinde haz\u0131rlanan ara\u015ft\u0131rmaya dair bulgular\u0131 i\u00e7eren raporun tan\u0131t\u0131m toplant\u0131s\u0131nda a\u00e7\u0131l\u0131\u015f konu\u015fmalar\u0131n\u0131 AIFD Y\u00f6netim Kurulu Ba\u015fkan Yard\u0131mc\u0131s\u0131 \u015eehram Zayer, Otizm Zihinsel \u00d6zel Gereksinimler ve Nadir Hastal\u0131klar Daire Ba\u015fkan\u0131 Prof. Dr. Onur Burak Dursun, T\u00dcSEB A\u015f\u0131 Enstit\u00fcs\u00fc Ba\u015fkan\u0131 Prof. Dr. Ate\u015f Kara ve Sa\u011fl\u0131k Hizmetleri Genel M\u00fcd\u00fcrl\u00fc\u011f\u00fc Genel M\u00fcd\u00fcr\u00fc Do\u00e7. Dr. \u0130hsan Ate\u015f ger\u00e7ekle\u015ftirdi. IQVIA Temsilcisi \u015eule Akbil de \u2018T\u00fcrkiye&#8217;de Nadir Hastal\u0131klar\u2019 sunumu ile raporda \u00f6ne \u00e7\u0131kan bulgular\u0131 payla\u015ft\u0131.<br><\/p>\n\n\n\n<p><strong>\u201cNadir hastal\u0131klarla m\u00fccadelede etkili tedavilere eri\u015fimde kamu, \u00f6zel sekt\u00f6r ve sivil toplum i\u015f<br>birlikleri kritik \u00f6nem ta\u015f\u0131yor\u201d<\/strong><\/p>\n\n\n\n<p><br>\u00dclkemizde son y\u0131llarda hem kamu hem de di\u011fer payda\u015flar taraf\u0131ndan nadir hastal\u0131klar alan\u0131nda \u00f6nemli ad\u0131mlar at\u0131ld\u0131\u011f\u0131n\u0131 s\u00f6yleyen AIFD Y\u00f6netim Kurulu Ba\u015fkan Yard\u0131mc\u0131s\u0131 \u015eehram Zayer \u015fu ifadeleri kulland\u0131: \u201cSa\u011fl\u0131k Hizmetleri Genel M\u00fcd\u00fcrl\u00fc\u011f\u00fc b\u00fcnyesinde Otizm, Zihinsel \u00d6zel Gereksinimler ve Nadir Hastal\u0131klar Daire Ba\u015fkanl\u0131\u011f\u0131n\u0131n kurulmas\u0131, TBMM Nadir Hastal\u0131klar Komisyonunun olu\u015fturulmas\u0131 ve nadir hastal\u0131klar alan\u0131ndaki ilk resmi plan olan \u2018Nadir Hastal\u0131klar Sa\u011fl\u0131k Strateji Belgesi ve Eylem Plan\u0131\u2019n\u0131n yay\u0131mlanmas\u0131 gibi \u00f6nemli geli\u015fmeler, \u00fclkemizde nadir hastal\u0131klarla m\u00fccadele eden herkesin gerekli tan\u0131 ve tedavi ko\u015fullar\u0131na eri\u015fmesi ad\u0131na at\u0131lan \u00f6nemli ad\u0131mlar oldu. Bug\u00fcn sizlerle payla\u015ft\u0131\u011f\u0131m\u0131z T\u00fcrkiye\u2019de Nadir Hastal\u0131klar raporumuzun 12. Kalk\u0131nma Plan\u0131\u2019nda yer verilen nadir hastal\u0131klarla m\u00fccadele ad\u0131mlar\u0131n\u0131 destekler nitelikte oldu\u011funa, bulgular\u0131n ve geli\u015fim alan\u0131 \u00f6nerilerinin, nadir hastal\u0131klar alan\u0131nda \u00fclkemizde s\u00fcrd\u00fcr\u00fclen \u00e7al\u0131\u015fmalara ve \u00e7\u00f6z\u00fcmlere \u00f6nemli \u00f6l\u00e7\u00fcde katk\u0131 sunaca\u011f\u0131na inan\u0131yoruz. Nadir hastal\u0131klar\u0131n etkin y\u00f6netiminde, bu hastal\u0131klara y\u00f6nelik Ar-Ge \u00e7al\u0131\u015fmalar\u0131n\u0131n y\u00fcr\u00fct\u00fclmesi, hastal\u0131klar\u0131n \u00f6nlenmesi ve erken tan\u0131s\u0131, hastalar\u0131n destek tedavileri d\u00e2hil ihtiya\u00e7 duyduklar\u0131 t\u00fcm tedavilere eri\u015fimi, hasta kay\u0131tlar\u0131n\u0131n uzun vadede ve d\u00fczenli olarak tutulmas\u0131 ve hem sa\u011fl\u0131k \u00e7al\u0131\u015fanlar\u0131 hem de toplum genelinde fark\u0131ndal\u0131k yarat\u0131lmas\u0131 b\u00fcy\u00fck \u00f6nem ta\u015f\u0131yor. T\u00fcrkiye\u2019de d\u00fcnyadaki uygulamalardan farkl\u0131 olarak nadir hastal\u0131klar\u0131n tedavisi i\u00e7in geli\u015ftirilen ila\u00e7lara \u2018yetim ila\u00e7\u2019 stat\u00fcs\u00fc verilmesine olanak sa\u011flayan yasal d\u00fczenlemelerin ger\u00e7ekle\u015ftirilmesi, ila\u00e7 ruhsatland\u0131rma y\u00f6netmeli\u011finde ve geri \u00f6deme y\u00f6netmeli\u011finde de yetim ilaca y\u00f6nelik d\u00fczenlemelere yer verilmesi, nadir hastal\u0131klar\u0131n tedavisinde kullan\u0131lan yetim ila\u00e7lar\u0131n ruhsat, fiyatland\u0131rma ve geri \u00f6deme s\u00fcre\u00e7lerinde farkl\u0131 ve efektif modellerin de\u011ferlendirilmesi ve ele al\u0131nmas\u0131 bu ila\u00e7lara eri\u015fim ad\u0131na at\u0131lacak \u00f6nemli ad\u0131mlar\u0131 olu\u015fturuyor. Nadir hastal\u0131klar ile m\u00fccadele eden hasta ve hasta yak\u0131nlar\u0131na gerekli desteklerin sa\u011flanabilmesi ve \u00fclkemizdeki hastalar\u0131n etkin tedaviye eri\u015febilmesi i\u00e7in kamu, \u00f6zel sekt\u00f6r ve sivil toplum kurulu\u015flar\u0131 taraf\u0131ndan yap\u0131lan i\u015f birlikleri \u00e7ok de\u011ferli. AIFD olarak her zaman oldu\u011fu gibi nadir hastal\u0131klar alan\u0131nda da geride hi\u00e7bir hastay\u0131 b\u0131rakmayacak tan\u0131 ve tedavilerin geli\u015ftirilece\u011fi bir d\u00fcnyaya giden yolda t\u00fcm payda\u015flarla yap\u0131c\u0131 i\u015f birli\u011fine a\u00e7\u0131k olmakla birlikte elimizden gelen katk\u0131y\u0131 sunmaya ve \u00e7\u00f6z\u00fcm orta\u011f\u0131 olmaya haz\u0131r\u0131z.\u201d<\/p>\n\n\n\n<p><br><strong>&#8220;Nadir hastal\u0131klar konusunda y\u00fcr\u00fctt\u00fc\u011f\u00fcm\u00fcz \u00e7al\u0131\u015fmalar sadece t\u0131bbi bir sorumluluk de\u011fil ayn\u0131<br>zamanda etik bir sorumluluk\u201d<\/strong><\/p>\n\n\n\n<p><br>Sa\u011fl\u0131k Hizmetleri Genel M\u00fcd\u00fcrl\u00fc\u011f\u00fc Genel M\u00fcd\u00fcr\u00fc Do\u00e7. Dr. \u0130hsan Ate\u015f ise konu\u015fmas\u0131nda, \u201cNadir hastal\u0131klar konusunda y\u00fcr\u00fctt\u00fc\u011f\u00fcm\u00fcz \u00e7al\u0131\u015fmalar\u0131n sadece t\u0131bbi bir sorumluluk de\u011fil ayn\u0131 zamanda etik bir sorumluluk oldu\u011funun da bilincindeyiz. Nadir Hastal\u0131klar\u0131n tan\u0131 ve tedavi s\u00fcre\u00e7lerini h\u0131zland\u0131rmak, ara\u015ft\u0131rma ve geli\u015ftirme faaliyetlerini artt\u0131rmak, hastalar ve hasta yak\u0131nlar\u0131na destek olmak son derece elzemdir. Bu s\u00fcre\u00e7te iyi bir i\u015f birli\u011fi \u00f6rne\u011fi olarak bizlere katk\u0131da bulunan herkese te\u015fekk\u00fcrlerimi iletiyorum. \u00d6n\u00fcm\u00fczdeki 5 y\u0131ll\u0131k s\u00fcre\u00e7te nadir hastal\u0131klara y\u00f6nelik t\u00fcm payda\u015flar\u0131n kat\u0131l\u0131m\u0131 ile d\u00fczenlenen bug\u00fcnk\u00fc \u00e7al\u0131\u015ftay\u0131m\u0131z\u0131n \u00f6nemli bir yol g\u00f6sterici olaca\u011f\u0131na inan\u0131yorum&#8221; dedi. T\u00fcrkiye\u2019de nadir hastal\u0131klara sahip bireylerin do\u011fru tan\u0131 alana kadar yakla\u015f\u0131k 7 y\u0131l ge\u00e7irdi\u011fini ve ortalama 8 uzman\u0131n kontrol\u00fcnden ge\u00e7ti\u011fini belirten raporda \u00f6ne \u00e7\u0131kan bulgular \u015f\u00f6yle s\u0131ralan\u0131yor:<\/p>\n\n\n\n<ul>\n<li>T\u00fcrkiye\u2019de 5 milyondan fazla bireyin herhangi bir nadir hastal\u0131\u011f\u0131 oldu\u011fu tahmin ediliyor.<\/li>\n\n\n\n<li>T\u00fcrkiye\u2019de nadir hastal\u0131klara sahip bireyler do\u011fru tan\u0131 alana kadar yakla\u015f\u0131k 7 y\u0131l ge\u00e7iriyor ve<br>yakla\u015f\u0131k 8 uzman\u0131n kontrol\u00fcnden ge\u00e7iyor.<\/li>\n\n\n\n<li>Avrupa\u2019ya k\u0131yasla T\u00fcrkiye\u2019de \u00e7ok y\u00fcksek olan akraba evlili\u011fi oran\u0131 (y\u00fczde 5\u2019in alt\u0131na kar\u015f\u0131l\u0131k y\u00fczde 23,2), \u00fclkemizde nadir hastal\u0131klar\u0131n g\u00f6r\u00fclme s\u0131kl\u0131\u011f\u0131n\u0131n Avrupa seviyesinin \u00fczerinde olabilece\u011fini d\u00fc\u015f\u00fcnd\u00fcr\u00fcyor.<\/li>\n\n\n\n<li>D\u00fcnya \u00e7ap\u0131nda, bug\u00fcne dek tan\u0131mlanm\u0131\u015f yakla\u015f\u0131k 8 bin nadir hastal\u0131k buluyor ve bunlara her y\u0131l<br>yenileri ekleniyor.<\/li>\n\n\n\n<li>Tan\u0131ml\u0131 hastal\u0131klar\u0131n y\u00fczde 70\u2019ten fazlas\u0131 genetik ge\u00e7i\u015fli olmakla birlikte yakla\u015f\u0131k y\u00fczde 70\u2019i<br>\u00e7ocukluk \u00e7a\u011f\u0131nda ortaya \u00e7\u0131k\u0131yor.<\/li>\n\n\n\n<li>Bug\u00fcne dek tan\u0131mlanm\u0131\u015f nadir hastal\u0131klar\u0131n ancak y\u00fczde 5\u2019i i\u00e7in tedavi geli\u015ftirilebilmi\u015ftir.<br>Tarama \u00e7al\u0131\u015fmalar\u0131 ile 4 bin 500 \u00e7ocu\u011fun var olan hastal\u0131klar\u0131n\u0131n sonu\u00e7lar\u0131ndan korunmas\u0131 ve<br>engellilik olu\u015fumunun \u00f6n\u00fcne ge\u00e7ilmesi sa\u011flan\u0131yor<\/li>\n\n\n\n<li>\u00dclkemizde 2021 sonu itibar\u0131yla 6 nadir hastal\u0131k yenido\u011fan taramas\u0131 program\u0131na d\u00e2hil edilmi\u015f durumda.<\/li>\n\n\n\n<li>T\u00fcrkiye\u2019de y\u00fcr\u00fct\u00fclen t\u00fcm yenido\u011fan tarama \u00e7al\u0131\u015fmalar\u0131 sayesinde y\u0131lda yakla\u015f\u0131k 4 bin 500 \u00e7ocu\u011fun var olan hastal\u0131klar\u0131n\u0131n sonu\u00e7lar\u0131ndan korunmas\u0131 ve engellilik olu\u015fumunun \u00f6n\u00fcne ge\u00e7ilmesi sa\u011flan\u0131yor.<\/li>\n\n\n\n<li>\u0130talya\u2019da ve ABD\u2019nin \u00e7e\u015fitli eyaletlerinde 50\u2019den fazla, Tayvan\u2019da ise 26\u2019dan fazla nadir hastal\u0131\u011f\u0131n<br>yenido\u011fan bebeklerde tarand\u0131\u011f\u0131 g\u00f6z \u00f6n\u00fcnde bulunduruldu\u011funda T\u00fcrkiye\u2019de bu program\u0131n geli\u015fim<br>potansiyeli g\u00f6r\u00fcl\u00fcyor.<\/li>\n\n\n\n<li>Nadir hastal\u0131klar\u0131n tedavisinde kullan\u0131lan yenilik\u00e7i ila\u00e7lar\u0131n pazara eri\u015fim s\u00fcre\u00e7lerinde \u00f6zellikle s\u00fcre a\u00e7\u0131s\u0131ndan aksakl\u0131klar ya\u015fan\u0131yor<\/li>\n\n\n\n<li>\u00dclkemizde 2009 y\u0131l\u0131ndan itibaren nadir hastal\u0131klar\u0131n tedavisinde kullan\u0131lan \u201cyetim ila\u00e7lara\u201d y\u00f6nelik bir yasal d\u00fczenleme \u00fczerinde \u00e7e\u015fitli \u00e7al\u0131\u015fmalar yap\u0131lm\u0131\u015fsa da herhangi bir yasa ya da y\u00f6netmelik hayata ge\u00e7irilmemi\u015f durumda.<\/li>\n\n\n\n<li>T\u00fcrkiye\u2019deki hastalar, ABD G\u0131da ve \u0130la\u00e7 Dairesi (Food and Drug Administration \u2013 FDA) veya Avrupa<br>\u0130la\u00e7 Kurumu (European Medicines Agency \u2013 EMA) taraf\u0131ndan yetim ila\u00e7 stat\u00fcs\u00fc tan\u0131nm\u0131\u015f ve bu<br>stat\u00fcs\u00fc h\u00e2l\u00e2 ge\u00e7erli olan toplam 416 adet ila\u00e7tan 151 adedine \u00e7e\u015fitli \u015fekillerde eri\u015febiliyor. Bu ila\u00e7lar\u0131n sadece 76 adedi T\u00fcrkiye\u2019de olmakla birlikte 75\u2019i \u00fclkemize Yurt D\u0131\u015f\u0131 \u0130la\u00e7 Listesi arac\u0131l\u0131\u011f\u0131yla getiriliyor.<\/li>\n<\/ul>\n\n\n\n<ul>\n<li>2017-2020 y\u0131llar\u0131 aras\u0131nda EMA onay\u0131 alan 57 yetim ilac\u0131n incelendi\u011fi bir \u00e7al\u0131\u015fmada bunlar\u0131n sadece 8\u2019ine T\u00fcrkiye\u2019de geri \u00f6demeli olarak eri\u015filebildi\u011fi, bu say\u0131n\u0131n 21 olan Avrupa ortalamas\u0131n\u0131n \u00e7ok gerisinde kald\u0131\u011f\u0131 g\u00f6r\u00fcl\u00fcyor.<\/li>\n\n\n\n<li>T\u00fcrkiye\u2019de eri\u015filen 8 yetim ila\u00e7tan sadece 2\u2019sinin \u00fclkemizde ruhsatl\u0131 oldu\u011fu, di\u011ferlerine Yurt D\u0131\u015f\u0131<br>\u0130la\u00e7 Listesi \u00fczerinden eri\u015fildi\u011fi saptanm\u0131\u015f durumda. S\u00f6z konusu ila\u00e7lara EMA onay\u0131ndan itibaren<br>T\u00fcrkiye\u2019ye Yurt D\u0131\u015f\u0131 \u0130la\u00e7 Listesi \u00fczerinden geri \u00f6demeli eri\u015fimin ortalama 461 g\u00fcnde sa\u011fland\u0131\u011f\u0131, bu<br>s\u00fcrenin Almanya\u2019da 102 g\u00fcn oldu\u011fu g\u00f6zlemleniyor.<\/li>\n\n\n\n<li>T\u00fcrkiye\u2019de \u00e7e\u015fitli bran\u015flardaki uzman hekim say\u0131lar\u0131 zaman i\u00e7inde art\u0131\u015f g\u00f6sterirken \u00fclkemizde ki\u015fi ba\u015f\u0131na d\u00fc\u015fen uzman hekim say\u0131s\u0131 hen\u00fcz Ekonomik Kalk\u0131nma ve \u0130\u015fbirli\u011fi \u00d6rg\u00fct\u00fc (OECD) ortalamas\u0131n\u0131n olduk\u00e7a gerisinde yer al\u0131yor ve uzman hekimlerin \u00fclke geneline da\u011f\u0131l\u0131m\u0131nda e\u015fitsizlik g\u00f6zleniyor.<\/li>\n<\/ul>\n\n\n\n<p>Raporda nadir hastal\u0131klarla ilgili bulgular\u0131n yan\u0131 s\u0131ra ulusal politikalar, altyap\u0131 ve Ar-Ge olmak \u00fczere \u00fc\u00e7 konu oda\u011f\u0131nda, 19 \u00e7\u00f6z\u00fcm \u00f6nerisi de yer al\u0131yor:<br><\/p>\n\n\n\n<p>Raporda yer alan ulusal politika \u00f6nerileri<br>\uf0b7 Olu\u015fturulacak ortak bir komisyon \u00f6nderli\u011finde nadir hastal\u0131klara \u00f6zel ulusal plan, politika ve stratejilerin belirlenmesi ve uygulamas\u0131n\u0131n takibi<br>\uf0b7 Uluslararas\u0131 standartlarla uyumlu nadir hastal\u0131klar\u0131n tedavisinde kullan\u0131lan \u201cyetim ila\u00e7\u2019\u2019 tan\u0131m\u0131n\u0131n belirlenmesi ve ilgili mevzuat\u0131n olu\u015fturulmas\u0131<br>\uf0b7 Nadir hastal\u0131k tedavilerinde ruhsat s\u00fcrecinin h\u0131zland\u0131r\u0131lmas\u0131<br>\uf0b7 Nadir hastal\u0131k tedavilerine y\u00f6nelik fiyatland\u0131rma ve geri \u00f6deme s\u00fcre\u00e7lerinin iyile\u015ftirilmesi<br>\uf0b7 Nadir hastal\u0131klar\u0131n tan\u0131 ve tedavisinde kullan\u0131lan test ve t\u0131bbi cihazlara eri\u015fimin kolayla\u015ft\u0131r\u0131lmas\u0131<br>\uf0b7 T\u00fcrkiye&#8217;nin nadir hastal\u0131klar konusunda d\u00fcnyada \u00f6nde gelen organizasyonlarda aktif \u015fekilde yer almas\u0131<br>\uf0b7 Nadir hastal\u0131klar alan\u0131nda kamu ve \u00f6zel sekt\u00f6r i\u015f birliklerinin hayata ge\u00e7irilmesine ve kapsam\u0131n\u0131n geni\u015fletilmesine zemin olu\u015fturulmas\u0131<br>\uf0b7 Nadir hastal\u0131klarda toplumun fark\u0131ndal\u0131\u011f\u0131n\u0131 ve bilgi d\u00fczeyini art\u0131rmaya y\u00f6nelik faaliyetler ger\u00e7ekle\u015ftirilmesi<br>\uf0b7 Hasta derneklerinin g\u00fc\u00e7lendirilmesi ve uluslararas\u0131 kurulu\u015flar ile ileti\u015fiminin geli\u015ftirilmesi, raporda altyap\u0131 s\u00fcre\u00e7lerine ili\u015fkin yer alan \u00f6neriler<br>\uf0b7 Nadir hastal\u0131klar\u0131n tan\u0131 ve tedavisinde g\u00f6rev alan uzman hekimlere eri\u015fimin art\u0131r\u0131lmas\u0131<br>\uf0b7 Nadir hastal\u0131klar\u0131n y\u00f6netiminde g\u00f6rev alacak, nadir hastal\u0131klar \u00fczerine e\u011fitimli t\u0131bbi destek hizmetleri ve sosyal hizmetler personellerine eri\u015fimin iyile\u015ftirilmesi<br>\uf0b7 Birinci basamak sa\u011fl\u0131k kurulu\u015flar\u0131nda g\u00f6rev yapan hekimlerin ve di\u011fer sa\u011fl\u0131k personelinin nadir hastal\u0131klarla ilgili fark\u0131ndal\u0131k ve bilin\u00e7 d\u00fczeyinin art\u0131r\u0131lmas\u0131<br>\uf0b7 Nadir hastal\u0131klar alan\u0131nda ulusal ve uluslararas\u0131 referans ve ileti\u015fim a\u011flar\u0131n\u0131n kurulmas\u0131 ve g\u00fc\u00e7lendirilmesi<br>\uf0b7 Tarama program\u0131 kapsam\u0131ndaki hastal\u0131klar\u0131n geni\u015fletilmesi ve tarama sonucu risk grubunda oldu\u011fu belirlenen hastalara sunulan dan\u0131\u015fmanl\u0131k hizmetlerinin iyile\u015ftirilmesi<br>\uf0b7 Nadir hastal\u0131klara \u00f6zel multidisipliner yakla\u015f\u0131m\u0131n benimsendi\u011fi uzmanl\u0131k merkezleri olu\u015fturulmas\u0131 ve bu merkezler i\u00e7in akreditasyon kriterlerinin belirlenerek kontrol\u00fcn\u00fcn sa\u011flanmas\u0131<br>\uf0b7 Nadir hastal\u0131k tan\u0131s\u0131 alan hastalar\u0131n ve risk ta\u015f\u0131yan bireylerin sa\u011fl\u0131k kay\u0131tlar\u0131n\u0131n d\u00fczenli tutulmas\u0131 ve takip edilmesi<br>\uf0b7 \u00dclkemizde eri\u015filebilen ancak hen\u00fcz ruhsat onay\u0131 almam\u0131\u015f, nadir hastal\u0131klar alan\u0131nda kullan\u0131lan tedaviler i\u00e7in ger\u00e7ek ya\u015fam verisi \u00e7al\u0131\u015fmas\u0131 yap\u0131labilmesinde esneklik sa\u011flanmas\u0131 raporda Ar-Ge s\u00fcre\u00e7lerine ili\u015fkin yer alan \u00f6neriler<br>\uf0b7 Nadir hastal\u0131klar\u0131n tan\u0131 ve tedavisine y\u00f6nelik \u00fcr\u00fcnlerin T\u00fcrkiye\u2019de geli\u015ftirilmesi i\u00e7in Ar-Ge faaliyetlerinin desteklenmesi, bu faaliyetler i\u00e7in uygun zemin olu\u015fturulmas\u0131 ve te\u015fviklerin sa\u011flanmas\u0131<\/p>\n\n\n\n<p>\uf0b7 Nadir hastal\u0131klar alan\u0131nda T\u00fcrkiye\u2019de ger\u00e7ekle\u015ftirilen klinik ara\u015ft\u0131rma say\u0131s\u0131n\u0131n art\u0131r\u0131lmas\u0131 T\u00fcrkiye\u2019de Nadir Hastal\u0131klar raporunun kamuoyu ile payla\u015f\u0131ld\u0131\u011f\u0131 toplant\u0131n\u0131n ikinci b\u00f6l\u00fcm\u00fcnde Sa\u011fl\u0131k Hizmetleri Genel M\u00fcd\u00fcrl\u00fc\u011f\u00fc Otizm Zihinsel \u00d6zel Gereksinimler ve Nadir Hastal\u0131klar Daire Ba\u015fkanl\u0131\u011f\u0131 ile Nadir Hastal\u0131klar Sa\u011fl\u0131k Strateji Belgesi ve Eylem Plan\u0131 kapsam\u0131nda ilgili kamu kurulu\u015flar\u0131, hasta derne\u011fi temsilcileri ve sekt\u00f6r payda\u015flar\u0131n\u0131n yer ald\u0131\u011f\u0131 bir \u00e7al\u0131\u015ftay ger\u00e7ekle\u015ftirildi. Birlikte hareket etmenin ve i\u015f birli\u011finin gerekli oldu\u011fu nadir hastal\u0131klar alan\u0131nda ger\u00e7ekle\u015fen \u00e7al\u0131\u015ftayda Strateji Belgesi ve Eylem Plan\u0131\u2019nda yer alan Fark\u0131ndal\u0131\u011f\u0131n ve Bilgi D\u00fczeyinin Art\u0131r\u0131lmas\u0131, Hasta ve Hasta Yak\u0131nlar\u0131n\u0131n Desteklenmesi ve Ya\u015fam Kalitelerinin Art\u0131r\u0131lmas\u0131, Nadir Hastal\u0131klar\u0131n Tan\u0131s\u0131 ve \u00d6nlenmesi, Tedavi ve Bak\u0131m Hizmetleri, Ara\u015ft\u0131rma ve Geli\u015ftirme \u00c7al\u0131\u015fmalar\u0131 olmak \u00fczere 5 ana ba\u015fl\u0131k de\u011ferlendirildi. \u00c7al\u0131\u015ftay sonu\u00e7lar\u0131n\u0131n ilerleyen g\u00fcnlerde payla\u015f\u0131lmas\u0131 planlan\u0131yor.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ara\u015ft\u0131rmac\u0131 \u0130la\u00e7 Firmalar\u0131 Derne\u011fi (AIFD) giri\u015fimiyle haz\u0131rlanan \u2018T\u00fcrkiye\u2019de Nadir<br \/>\nHastal\u0131klar\u2019 raporu, \u00fclkemizde 5 milyonun \u00fczerinde ki\u015fiyi etkileyen nadir hastal\u0131klar<br \/>\ni\u00e7in mevcut durum hakk\u0131nda saptamalar yaparken bir yandan da ulusal politika,<br \/>\naltyap\u0131 ve Ar-Ge konular\u0131nda \u00f6neriler sunuyor.<\/p>\n","protected":false},"author":1,"featured_media":2515,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[48,3],"tags":[],"_links":{"self":[{"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/posts\/2514"}],"collection":[{"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/comments?post=2514"}],"version-history":[{"count":12,"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/posts\/2514\/revisions"}],"predecessor-version":[{"id":2531,"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/posts\/2514\/revisions\/2531"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/media\/2515"}],"wp:attachment":[{"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/media?parent=2514"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/categories?post=2514"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/pharmaworlddergi.com\/wp-json\/wp\/v2\/tags?post=2514"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}