{"id":19787,"date":"2024-02-27T04:26:00","date_gmt":"2024-02-27T04:26:00","guid":{"rendered":"https:\/\/www.euegeajans.com\/?p=19787"},"modified":"2024-02-27T07:28:28","modified_gmt":"2024-02-27T07:28:28","slug":"nadir-hastaliklar-konusunda-farkindalik-olusturulacak","status":"publish","type":"post","link":"https:\/\/www.euegeajans.com\/index.php\/2024\/02\/27\/nadir-hastaliklar-konusunda-farkindalik-olusturulacak\/","title":{"rendered":"Nadir hastal\u0131klar konusunda fark\u0131ndal\u0131k olu\u015fturulacak"},"content":{"rendered":"

\u201cII. Nadir Hastal\u0131klar G\u00fcn\u00fc Sempozyumu\u201d d\u00fczenlenecek<\/p>\n

\u00a0<\/b>Nadir hastal\u0131klar konusunda fark\u0131ndal\u0131k olu\u015fturulacak<\/b><\/p>\n

Toplumda g\u00f6r\u00fclme s\u0131kl\u0131\u011f\u0131 2 binde 1\u2019den daha az olan hastal\u0131klar, bilim d\u00fcnyas\u0131 taraf\u0131ndan nadir hastal\u0131klar olarak tan\u0131mlan\u0131yor. Kronik bir s\u00fcre\u00e7 izleyerek uzun y\u0131llar devam eden bu hastal\u0131klar, \u00f6nemli sa\u011fl\u0131k sorunlar\u0131na da yol a\u00e7\u0131yor. Bilim insanlar\u0131 8 binin \u00fczerinde nadir hastal\u0131k oldu\u011funa dikkat \u00e7ekiyor.<\/p>\n

Nadir hastal\u0131klara kar\u015f\u0131 insanlar\u0131 bilin\u00e7lendirmek, bu hastalar\u0131n tan\u0131 ve tedaviye kolayca ula\u015fmalar\u0131n\u0131 sa\u011flamak amac\u0131 ile her y\u0131l \u015fubat ay\u0131n\u0131n son g\u00fcn\u00fc \u201cNadir Hastal\u0131klar G\u00fcn\u00fc\u201d kapsam\u0131nda \u00e7e\u015fitli etkinliklerle fark\u0131ndal\u0131k \u00e7al\u0131\u015fmalar\u0131 y\u00fcr\u00fct\u00fcl\u00fcyor.<\/p>\n

Ulusal Nadir Hastal\u0131klar Derne\u011finin temelleri (NADHAS) ge\u00e7en y\u0131l Ege \u00dcniversitesi T\u0131p Fak\u00fcltesinde g\u00f6rev yapan multidisipliner bir ekip taraf\u0131ndan at\u0131ld\u0131. Bu ekip 29 \u015eubat 2024 tarihinde nadir hastal\u0131klara dikkat \u00e7ekmek ve en g\u00fcncel bilgileri bilim d\u00fcnyas\u0131 ile payla\u015fmak amac\u0131yla \u201c2. Nadir Hastal\u0131klar G\u00fcn\u00fc Sempozyumu\u201dnda yine bir araya gelecek. A\u00e7\u0131l\u0131\u015f\u0131n\u0131 Ulusal Nadir Hastal\u0131klar Derne\u011fi Ba\u015fkan\u0131 ve Ege \u00dcniversitesi T\u0131p Fak\u00fcltesi \u0130\u00e7 Hastal\u0131klar\u0131 Alerji ve Klinik \u0130mmu\u0308noloji Anabilim Dal\u0131 \u00f6\u011fretim \u00fcyesi Prof. Dr. Nihal Mete G\u00f6kmen\u2019in ve Ege \u00dcniversitesi T\u0131p Fak\u00fcltesi Dekan\u0131 Prof. Dr. R\u00fc\u00e7han Sert\u00f6z\u2019\u00fcn yapaca\u011f\u0131 sempozyuma farkl\u0131 disiplinlerden bilim insanlar\u0131 kat\u0131larak nadir hastal\u0131klar\u0131n semptomlar\u0131, tan\u0131lar\u0131 ve tedavilerinden bahsedecekler. Etkinlik kapsam\u0131nda, \u201cNadir Hastal\u0131klar\u0131n Alerjik Y\u00fcz\u00fc, Nadir Hastal\u0131klar\u0131n Romatolojik Y\u00fcz\u00fc, Nadir Hastal\u0131klar\u0131n Acil ve Yo\u011fun Bak\u0131m Y\u00fcz\u00fc, Nadir Hastal\u0131klar Seyir Defteri, Hastam Her \u015eeye Alerjik, Rabdomyoliz Kal\u0131tsal Metabolik Hastal\u0131klar \u0130\u00e7in \u0130pucu!, \u0130mmun Yetmezlik, Herediter Anjiyo\u00f6dem ve Nadir Hastal\u0131klar\u0131n N\u00f6rolojik Y\u00fcz\u00fc\u201d ba\u015fl\u0131kl\u0131 9 panel d\u00fczenlenecek.<\/p>\n

\"\"\u201cNadir hastal\u0131klara sahip insanlar kaliteli tedaviyi hak ediyor\u201d<\/b><\/p>\n

Ulusal Nadir Hastal\u0131klar Derne\u011fi Ba\u015fkan\u0131 ve Ege \u00dcniversitesi T\u0131p Fak\u00fcltesi \u0130\u00e7 Hastal\u0131klar\u0131 Alerji ve Klinik \u0130mmu\u0308noloji Anabilim Dal\u0131 \u00f6\u011fretim \u00fcyesi Prof. Dr. Nihal Mete G\u00f6kmen, \u201c\u00dclkemizin t\u0131p ve sa\u011fl\u0131k alan\u0131ndaki g\u00fc\u00e7l\u00fc markas\u0131 olan Ege \u00dcniversitesi T\u0131p Fak\u00fcltesi Hastanesi, klinik ara\u015ft\u0131rmalarda Avrupa\u2019n\u0131n say\u0131l\u0131 referans merkezleri aras\u0131nda yer al\u0131yor. Yetkin bilim insanlar\u0131 ve son teknoloji donan\u0131ml\u0131 laboratuvar altyap\u0131s\u0131 ile \u00f6nemli t\u0131bb\u0131 ba\u015far\u0131lara ev sahipli\u011fi yapan T\u0131p Fak\u00fcltemizin farkl\u0131 disiplinlerinde g\u00f6rev yapan Prof. Dr. Meral Kay\u0131k\u00e7\u0131o\u011flu, Prof. Dr. \u00d6m\u00fcr Ardeniz, Do\u00e7. Dr. Asl\u0131 K\u0131lavuz ile Ulusal Nadir Hastal\u0131klar Derne\u011fini kurduk. Son y\u0131llarda giderek ilgi ve fark\u0131ndal\u0131\u011f\u0131n artt\u0131\u011f\u0131 nadir hastal\u0131klar, \u00fclkemiz i\u00e7in de \u00e7ok \u00f6nemli bir sa\u011fl\u0131k sorununu olu\u015fturuyor. 2 binde 1 ya da daha az s\u0131kl\u0131kta g\u00f6r\u00fclen hastal\u0131klar nadir hastal\u0131k olarak kabul ediliyor. D\u00fcnyada yakla\u015f\u0131k 350 milyon ki\u015finin nadir bir hastal\u0131\u011fa sahip oldu\u011fu \u00f6ng\u00f6r\u00fcl\u00fcyor. Nadir hastal\u0131klar\u0131 olan bireyler, daha fazla bilinen s\u0131k rastlanan hastal\u0131klar\u0131 olan hastalar kadar g\u00fcvenilir, kaliteli ve etkin tedavileri hak ediyor\u201d diye konu\u015ftu.<\/p>\n

\u201cHastal\u0131klara tan\u0131 konmas\u0131 uzun y\u0131llar s\u00fcrebiliyor\u201d<\/b><\/p>\n

Prof. Dr. Nihal Mete G\u00f6kmen, \u201cNadir hastal\u0131klar\u0131 nadir yapan sadece g\u00f6r\u00fclme s\u0131kl\u0131\u011f\u0131n\u0131n az olmas\u0131 de\u011fil, hekimlerin fark\u0131ndal\u0131\u011f\u0131n\u0131n da son derece az olmas\u0131d\u0131r. Hekim fark\u0131ndal\u0131\u011f\u0131ndaki azl\u0131\u011f\u0131n en \u00f6nemli nedeni t\u0131p fak\u00fcltelerinde e\u011fitim m\u00fcfredat\u0131nda nadir hastal\u0131klar\u0131n hemen hemen hi\u00e7 yer almamas\u0131d\u0131r. Nadir hastal\u0131klar konusunda tecr\u00fcbeli \u00f6\u011fretim elemanlar\u0131 maalesef bir\u00e7ok t\u0131p fak\u00fcltesinde bulunmamaktad\u0131r. Dahili bilimlerde genel olarak s\u0131k g\u00f6r\u00fclen kalp hastal\u0131klar\u0131, endokrin hastal\u0131klar, enfeksiyonlar, kanserler gibi hastal\u0131klara yer verilmektedir. Nadir hastal\u0131klar konusunda fark\u0131ndal\u0131\u011f\u0131n artmas\u0131 mezuniyet sonras\u0131 verilecek e\u011fitimler, toplant\u0131lar ve kongreler ile ancak m\u00fcmk\u00fcn olabilecektir. Nadir hastal\u0131\u011fa sahip bir bireyin ger\u00e7ek tan\u0131y\u0131 almas\u0131 uzun y\u0131llar s\u00fcrmektedir. Bu s\u00fcre zarf\u0131nda hasta e\u011fer vefat etmezse yanl\u0131\u015f tan\u0131lar almakta, yanl\u0131\u015f tedaviler uygulanmakta ve gereksiz operasyonlar ge\u00e7irebilmektedir. Derne\u011fimiz nadir hastal\u0131klar\u0131n semptomlar\u0131, g\u00f6r\u00fclme s\u0131kl\u0131klar\u0131 ve tedavileri konular\u0131nda hekimlerimizin bilgi d\u00fczeyini art\u0131rmak amac\u0131yla kurulmu\u015ftur. Bu sayede tan\u0131 alan hastalar\u0131n tan\u0131 alma s\u00fcrelerini k\u0131saltmak, hastal\u0131\u011fa ba\u011fl\u0131 geri d\u00f6n\u00fc\u015f\u00fc olmayan sakatl\u0131klar\u0131n geli\u015fimini engellemek ve \u00f6l\u00fcmleri \u00f6nlemek hedeflenmektedir\u201d dedi.<\/p>\n

\u201cAileleri bilin\u00e7lendirmeyi hedefliyoruz\u201d<\/b><\/p>\n

T\u00fcrkiye\u2019de akraba evliliklerinin yayg\u0131n olmas\u0131n\u0131n, genetik ge\u00e7i\u015fli nadir hastal\u0131klar\u0131n g\u00f6r\u00fclme s\u0131kl\u0131\u011f\u0131n\u0131 art\u0131rd\u0131\u011f\u0131n\u0131 vurgulayan Prof. Dr. Nihal Mete G\u00f6kmen, \u201cDerne\u011fimiz akraba evliliklerinin \u00f6nlenmesi ve aile taramalar\u0131 ile hen\u00fcz semptom geli\u015ftirmemi\u015f olgular\u0131n ortaya \u00e7\u0131kar\u0131lmalar\u0131 konular\u0131nda aileleri bilin\u00e7lendirerek sosyal sorumluluk projeleri ger\u00e7ekle\u015ftirmeyi de hedeflemektedir. Derne\u011fimizin logosunu \u00e7ok eski\u00e7a\u011flardan itibaren \u015fans getirdi\u011fine inan\u0131lan 4 yaprakl\u0131 yonca olu\u015fturmaktad\u0131r; yoncan\u0131n ilk yapra\u011f\u0131 umudu, ikinci yapra\u011f\u0131 inanc\u0131, \u00fc\u00e7\u00fcnc\u00fc yapra\u011f\u0131 sevgiyi ve d\u00f6rd\u00fcnc\u00fc yapra\u011f\u0131 \u015fans\u0131 temsil etmektedir. Do\u011fada her 10 bin \u00fc\u00e7 yaprakl\u0131 yoncada bir d\u00f6rt yaprakl\u0131 yoncaya rastlan\u0131r. Derne\u011fimizin t\u00fcm hekimlerimize ba\u015far\u0131l\u0131 tan\u0131 koymalar\u0131nda k\u0131lavuz olu\u015fturaca\u011f\u0131na olan inanc\u0131m\u0131z y\u00fcksektir. Derne\u011fimizin kurucu hekimleri olarak umudumuzun, inanc\u0131m\u0131z\u0131n ve hastalar\u0131m\u0131za olan sevgimizin yetim olarak adland\u0131r\u0131lan nadir hastal\u0131klar i\u00e7in \u015fans getirmesini diliyoruz\u201d dedi.<\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cII. Nadir Hastal\u0131klar G\u00fcn\u00fc Sempozyumu\u201d d\u00fczenlenecek \u00a0Nadir hastal\u0131klar konusunda fark\u0131ndal\u0131k olu\u015fturulacak Toplumda g\u00f6r\u00fclme s\u0131kl\u0131\u011f\u0131 2…<\/p>\n","protected":false},"author":2,"featured_media":19788,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[99,1,70,68],"tags":[],"class_list":["post-19787","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-egitim","category-gncl","category-kampus","category-saglik"],"featured_image_urls":{"full":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5.jpg",634,892,false],"thumbnail":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5-150x150.jpg",150,150,true],"medium":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5-213x300.jpg",213,300,true],"medium_large":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5.jpg",634,892,false],"large":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5.jpg",634,892,false],"1536x1536":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5.jpg",634,892,false],"2048x2048":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5.jpg",634,892,false],"newsphere-slider-full":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5-634x720.jpg",634,720,true],"newsphere-featured":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5.jpg",634,892,false],"newsphere-medium":["https:\/\/www.euegeajans.com\/wp-content\/uploads\/2024\/02\/EGE-NIHAL-METE-GOKMEN-II.-Nadir-Hastaliklar-Gunu-Sempozyumu-duzenlenecek-5-634x380.jpg",634,380,true]},"author_info":{"display_name":"Editor","author_link":"https:\/\/www.euegeajans.com\/index.php\/author\/editor\/"},"category_info":"E\u011fitim<\/a> G\u00fcncel<\/a> Kamp\u00fcs<\/a> Sa\u011fl\u0131k<\/a>","tag_info":"Sa\u011fl\u0131k","comment_count":"0","_links":{"self":[{"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/posts\/19787","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/comments?post=19787"}],"version-history":[{"count":1,"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/posts\/19787\/revisions"}],"predecessor-version":[{"id":19790,"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/posts\/19787\/revisions\/19790"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/media\/19788"}],"wp:attachment":[{"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/media?parent=19787"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/categories?post=19787"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.euegeajans.com\/index.php\/wp-json\/wp\/v2\/tags?post=19787"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}