{"id":2345,"date":"2023-02-28T12:35:07","date_gmt":"2023-02-28T12:35:07","guid":{"rendered":"https:\/\/kibrisdakik.com\/index.php\/2023\/02\/28\/nadir-hastaliklar-politika-calistayindan-elde-edilen-rapor-basinla-paylasildi\/"},"modified":"2023-02-28T12:35:07","modified_gmt":"2023-02-28T12:35:07","slug":"nadir-hastaliklar-politika-calistayindan-elde-edilen-rapor-basinla-paylasildi","status":"publish","type":"post","link":"https:\/\/kibrisdakik.com\/?p=2345","title":{"rendered":"Nadir Hastal\u0131klar Politika \u00c7al\u0131\u015ftay\u0131\u2019ndan elde edilen rapor bas\u0131nla payla\u015f\u0131ld\u0131"},"content":{"rendered":"

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Bug\u00fcn 28 \u015eubat Nadir G\u00f6r\u00fclen Hastal\u0131klar G\u00fcn\u00fc\u2026
2 binde 1 ki\u015fide g\u00f6r\u00fclen hastal\u0131k nadir g\u00f6r\u00fclen hastal\u0131k grubuna giriyor.<\/p>\n

\u201cD\u00fcnyada yakla\u015f\u0131k 8 bin nadir hastal\u0131k t\u00fcr\u00fc tan\u0131mland\u0131. 350 milyona yak\u0131n ki\u015fi ise nadir g\u00f6r\u00fclen bir hastal\u0131\u011fa sahip.
Hastal\u0131klar\u0131n y\u00fczde 80\u2019inin genetik ge\u00e7i\u015fli oldu\u011fu belirtiliyor. Hastalar\u0131n y\u00fczde 50\u2019sini \u00e7ocuklar olu\u015fturmakta.
Yap\u0131lan ara\u015ft\u0131rmalar KKTC<\/a>\u2019de ise 50 t\u00fcr nadir hastal\u0131k bulundu\u011funu g\u00f6steriyor.<\/p>\n

Evrensel Hasta Haklar\u0131 Derne\u011fi organizasyonuyla 6 Ocak 2023\u2019te d\u00fczenlenen Nadir Hastal\u0131klar Politika \u00c7al\u0131\u015ftay\u0131\u2019na kat\u0131lan bir\u00e7ok hekim, genetik uzman\u0131, biyokimya uzman\u0131, hukuk\u00e7u, istatistik\u00e7i, sivil toplum aktivisti, gazeteci ve hastalar\u0131n katk\u0131 koydu\u011fu \u201cK\u0131br\u0131s\u2019\u0131n kuzeyinde nadir hastal\u0131klar politika geli\u015ftirme raporu\u201d bas\u0131nla payla\u015f\u0131ld\u0131.<\/p>\n

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K\u0131br\u0131s T\u00fcrk Tabipleri Birli\u011fi konferans salonunda d\u00fczenlenen bas\u0131n toplant\u0131s\u0131nda K\u0131br\u0131s T\u00fcrk Tabipleri Birli\u011fi Genel Sekreteri Dr. Ceyhun Dalkan, Evrensel Hasta Haklar\u0131 Derne\u011fi Ba\u015fkan\u0131 Dr. Ay\u015fe Zeki ve Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131 Genetik Uzman\u0131 Do\u00e7. Dr. Mahmut \u00c7erkez Erg\u00f6ren yer ald\u0131.<\/p>\n

K\u0131br\u0131s T\u00fcrk Tabipleri Birli\u011fi Genel Sekreteri Dr. Ceyhun Dalkan yapt\u0131\u011f\u0131 konu\u015fmada Nadir g\u00f6r\u00fclen hastal\u0131\u011fa sahip ki\u015filerin tedavi ve tan\u0131 almakta zorluklar ya\u015fad\u0131\u011f\u0131n\u0131, ulusal veri a\u011f\u0131 olmad\u0131\u011f\u0131 i\u00e7in de s\u0131kl\u0131\u011f\u0131 ve \u00e7e\u015fitlili\u011fi hakk\u0131nda s\u0131k\u0131nt\u0131lar ya\u015fand\u0131\u011f\u0131n\u0131 aktard\u0131.
Dr. Ceyhun Dalkan, konu\u015fmas\u0131nda koruyucu sa\u011fl\u0131k hizmetlerinin \u00f6nemine i\u015faret ederek yeni do\u011fan taramalar\u0131n\u0131n \u00fccretsiz devlet taraf\u0131ndan sa\u011flanmas\u0131 gerekti\u011fini vurgulad\u0131.<\/p>\n

Ceyhun Dalkan ak\u0131lc\u0131 b\u00fct\u00e7e y\u00f6netimiyle do\u011fru bir sistem \u00fczerinden programlaman\u0131n daha kolay olaca\u011f\u0131n\u0131 da ifade etti.<\/p>\n

Daha sonra Evrensel Hasta Haklar\u0131 Derne\u011fi Ba\u015fkan\u0131 Dr. Ay\u015fe Zeki \u2018Nadir hastal\u0131klar politika geli\u015ftirme\u2019 raporunu sundu, derne\u011fin \u00e7al\u0131\u015fmalar\u0131ndan ve Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131\u2019n\u0131n hedef ve \u00e7al\u0131\u015fmalar\u0131ndan bahsetti.<\/p>\n

Raporda, Nadir Hastal\u0131klar E\u011fitim Komisyonu\u2019nun kurulmas\u0131 konuyla ilgili fark\u0131ndal\u0131k 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 \u00f6nlenmesi gibi noktalarda \u00f6ng\u00f6r\u00fcler payla\u015f\u0131ld\u0131. <\/p>\n

Raporda geni\u015fletilmi\u015f yeni do\u011fan taramas\u0131 ve ta\u015f\u0131y\u0131c\u0131 taramalar\u0131n\u0131n \u00f6nemine i\u015faret edilerek \u00f6zellikle yeni do\u011fan taramalar\u0131n\u0131n \u00fclkemizde de zorunlu olmas\u0131 gerekti\u011fi \u00fczerinde duruldu. <\/p>\n

Nadir g\u00f6r\u00fclen hastal\u0131klardan birisinin de thalasemia oldu\u011funa dikkat \u00e7ekilerek bu alanda ba\u015far\u0131l\u0131 bir politika izlendi\u011fi de belirtildi.<\/p>\n

Sunumun ard\u0131ndan sorular da yan\u0131tland\u0131. <\/p>\n

Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131 Genetik Uzman\u0131 Do\u00e7. Dr. Mahmut \u00c7erkez Erg\u00f6ren bir soru \u00fczerine kay\u0131t\u00e7\u0131l\u0131k sisteminin olu\u015fturulmas\u0131n\u0131n \u00f6nemnini vurgulad\u0131 ve nadir hastal\u0131klar konusunda her \u00fclkenin kendine ait kuruallar\u0131 oldu\u011funu belirterek 2030 y\u0131l\u0131na kadar Nadir Hastal\u0131klar\u0131n bir \u00e7at\u0131 alt\u0131nda toplanmas\u0131n\u0131n d\u00fc\u015f\u00fcn\u00fcld\u00fc\u011f\u00fcn\u00fc aktard\u0131.<\/p>\n

\u00d6N RAPOR:<\/p>\n

nghapolitikabelgesi<\/a><\/p>\n<\/p><\/div>\n