{"id":3743,"date":"2025-04-23T13:50:45","date_gmt":"2025-04-23T10:50:45","guid":{"rendered":"https:\/\/dmdwarrior.com\/?p=3743"},"modified":"2025-04-23T14:02:04","modified_gmt":"2025-04-23T11:02:04","slug":"elevidys-gene-therapy-price-cut-in-russia-by-circle-of-kindness-foundation","status":"publish","type":"post","link":"https:\/\/dmdwarrior.com\/tr\/elevidys-gene-therapy-price-cut-in-russia-by-circle-of-kindness-foundation\/","title":{"rendered":"Rusya Merkezli Circle of Kindness Vakf\u0131, Elevidys Gen Terapisi i\u00e7in 18% Fiyat \u0130ndirimi Duyurdu"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Vakf\u0131n bas\u0131n b\u00fcrosundan yap\u0131lan a\u00e7\u0131klamaya g\u00f6re, &quot;Yap\u0131lan g\u00f6r\u00fc\u015fmeler sonucunda d\u00fcnyan\u0131n en pahal\u0131 ila\u00e7lar\u0131ndan birinin (Elevidys) fiyat\u0131 18%, yani 400 bin avro d\u00fc\u015f\u00fcr\u00fclerek 2,2 milyon avroya indirildi.&quot;<a href=\"https:\/\/dmdwarrior.com\/tr\/frequently-asked-questions-about-elevidys-used-for-duchenne-muscular-dystrophy\/\" target=\"_blank\" rel=\"noreferrer noopener\">SSS Elevidys<\/a>)<\/p>\n\n\n\n<div class=\"wp-block-rank-math-toc-block\" id=\"rank-math-toc\"><h2>\u0130\u00e7indekiler<\/h2><nav><ul><li><a href=\"#what-is-circle-of-kindness-foundation\">Circle of Kindness Vakf\u0131 Nedir?<\/a><\/li><li><a href=\"#why-was-circle-of-kindness-foundation-established\">Circle of Kindness Vakf\u0131 neden kuruldu?<\/a><\/li><li><a href=\"#take-from-the-rich-give-to-the-poor\">Zenginden Al, Fakire Ver<\/a><\/li><li><a href=\"#fas-and-circle-of-kindness-have-achieved-a-price-reduction-for-the-first-gene-therapy-elevidys\">Rusya&#039;da \u0130lk Gen Terapisi Elevidys \u0130\u00e7in Fiyat \u0130ndirimi<\/a><\/li><li><a href=\"#69-children-in-russia-receive-elevidys-gene-therapy\">Rusya&#039;da 69 \u00c7ocuk Elevidys Gen Terapisi Ald\u0131<\/a><\/li><\/ul><\/nav><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"what-is-circle-of-kindness-foundation\">Circle of Kindness Vakf\u0131 Nedir?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Ocak 2021&#039;de Rusya Devlet Ba\u015fkan\u0131 Vladimir Putin, Circle of Kindness Vakf\u0131&#039;n\u0131 kuran bir emir imzalad\u0131. Vakf\u0131n kapsad\u0131\u011f\u0131 100 rahats\u0131zl\u0131\u011f\u0131n bir listesiyle, temel amac\u0131 nadir ve ya\u015fam\u0131 tehdit eden hastal\u0131klar\u0131 olan \u00e7ocuklar i\u00e7in ila\u00e7 ve t\u0131bbi malzemelerin organizasyonunu ve finansal bulunabilirli\u011fini iyile\u015ftirmektir.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"why-was-circle-of-kindness-foundation-established\">Circle of Kindness Vakf\u0131 neden kuruldu?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Sa\u011fl\u0131k sistemleri yetim hastal\u0131klardan dolay\u0131 a\u011f\u0131r bir sosyoekonomik y\u00fck ta\u015f\u0131maktad\u0131r. Yetim hastal\u0131klar\u0131 olan hastalar\u0131n, \u00f6zellikle \u00e7ocuklar\u0131n, pahal\u0131 ila\u00e7lara eri\u015fimini garantilemek i\u00e7in uluslar \u00e7e\u015fitli prosed\u00fcrler olu\u015fturur. 2021&#039;de Rusya&#039;da, nadir (yetim) hastal\u0131klar da dahil olmak \u00fczere kronik ve ya\u015fam\u0131 tehdit eden hastal\u0131klar\u0131 olan \u00e7ocuklara yard\u0131m etmek i\u00e7in &quot;Circle of Kindness&quot; vakf\u0131 kuruldu.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"take-from-the-rich-give-to-the-poor\">Zenginden Al, Fakire Ver<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Rusya, nadir (yetim) hastal\u0131klar\u0131n sa\u011fl\u0131k sistemleri \u00fczerinde \u00f6nemli bir mali y\u00fck olu\u015fturmas\u0131na ve bu maliyetli tedavilere eri\u015fimin k\u0131s\u0131tl\u0131 olmas\u0131na ra\u011fmen, y\u00fcksek gelirli ki\u015filer taraf\u0131ndan toplanan bireysel gelir vergisinin 2%&#039;si taraf\u0131ndan finanse edilen &quot;Circle of Kindness&quot; adl\u0131 bir vak\u0131f kurdu. Bu s\u00fcrd\u00fcr\u00fclebilir mekanizma, 2021&#039;deki kurulu\u015fundan bu yana, Rusya Federasyonu&#039;nun 84 b\u00f6lgesinde nadir hastal\u0131\u011f\u0131 olan 24.000&#039;den fazla \u00e7ocu\u011fa toplam $2,4 milyar ABD dolar\u0131ndan fazla ila\u00e7 sa\u011flanmas\u0131n\u0131 m\u00fcmk\u00fcn k\u0131ld\u0131. Kaynak tahsis kararlar\u0131, sa\u011fl\u0131k teknolojisi de\u011ferlendirme s\u00fcreci kullan\u0131larak verilir.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Y\u00fcksek gelirli ki\u015filerin bireysel gelir vergilerinin 2%&#039;si &quot;Circle of Kindness&quot; Vakf\u0131&#039;n\u0131n finansman\u0131na gidiyor. Ba\u015fka bir deyi\u015fle, y\u0131lda 5 milyon rubleden fazla kazanan her Rus vatanda\u015f\u0131 vergilerinin 2%&#039;sini vakfa ba\u011f\u0131\u015fl\u0131yor. Nadir ve ya\u015fam\u0131 tehdit eden hastal\u0131klar\u0131 olan \u00e7ocuklar\u0131n yetim ila\u00e7lara eri\u015fimini sa\u011flaman\u0131n yan\u0131 s\u0131ra, bu g\u00fcvenilir ve s\u00fcrd\u00fcr\u00fclebilir finansman y\u00f6ntemi ayr\u0131ca devam eden topluluk ba\u011f\u0131\u015f toplama giri\u015fimlerine olan ihtiyac\u0131 da ortadan kald\u0131r\u0131yor.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Kuruldu\u011fu g\u00fcnden bu yana 84 noktada 24.000&#039;den fazla \u00e7ocu\u011fa yard\u0131m eden &quot;Circle of Kindness&quot;, bu \u00e7ok ihtiya\u00e7 duyulan tedaviye 226.000.000 ruble ($2,4 milyar ABD dolar\u0131 e\u015fde\u011feri) harcad\u0131.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"fas-and-circle-of-kindness-have-achieved-a-price-reduction-for-the-first-gene-therapy-elevidys\">Rusya&#039;da \u0130lk Gen Terapisi Elevidys \u0130\u00e7in Fiyat \u0130ndirimi<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Federal Antimonopoly Servisi ile birlikte, Circle of Kindness Charitable State Foundation, American Sarepta Therapeutics taraf\u0131ndan \u00fcretilen ilk gen terapisi olan Elevidys&#039;nin (delandistrogene moxeparvec) maliyetini \u00f6nemli \u00f6l\u00e7\u00fcde d\u00fc\u015f\u00fcrebildi. Bu, Duchenne kas distrofisi (DMD) olan bireylerde gen replasman tedavisi i\u00e7in geli\u015ftirilen ilk tek dozluk ila\u00e7t\u0131r. \u0130la\u00e7 Rusya&#039;da kay\u0131tl\u0131 de\u011fildir.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"69-children-in-russia-receive-elevidys-gene-therapy\">Rusya&#039;da 69 \u00c7ocuk Elevidys Gen Terapisi Ald\u0131<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">DMD geninin 8 ve\/veya 9. ekzonlar\u0131nda delesyon bulunan \u00e7ocuklar hari\u00e7, DMD geninde do\u011frulanm\u0131\u015f mutasyonu bulunan 4-5 ya\u015f aras\u0131 \u00e7ocuklar i\u00e7in Elevidys \u00f6nerilir. Vakfa g\u00f6re klinik deneyler bu ya\u015f aral\u0131\u011f\u0131ndaki \u00e7ocuklar i\u00e7in en iyi sonu\u00e7lar\u0131 vermi\u015ftir. Bu ilac\u0131 2024 y\u0131l\u0131nda sat\u0131n almaya ba\u015flad\u0131lar. DMD&#039;li 69 \u00e7ocuk, bunu yapan ilk \u00fclkelerden biri olan Rusya&#039;da kendilerine sunulan tek dozluk gen replasman ilac\u0131n\u0131 halihaz\u0131rda ald\u0131. Vak\u0131f, 2021 ile 2024 y\u0131llar\u0131 aras\u0131nda hastal\u0131\u011f\u0131 olan 531 \u00e7ocu\u011fa yard\u0131m etti.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Daha fazla bilgi edin: <a href=\"https:\/\/dmdwarrior.com\/tr\/russian-biotech-company-generium-has-begun-clinical-trials-of-a-gene-therapy-for-duchenne-muscular-dystrophy\/\">Rus Biyoteknoloji \u015eirketi Generium, Duchenne Kas Distrofisi \u0130\u00e7in Gen Terapisinin Klinik Denemelerine Ba\u015flad\u0131<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>According to the Foundation&#8217;s press office, &#8220;as a result of the negotiations, the price of one of the most expensive drugs (Elevidys) in the world was reduced by 18%, that is by \u20ac400,000, to \u20ac2.2 million.&#8221; (FAQ Elevidys) What is Circle of Kindness Foundation? In January 2021, Russian President Vladimir Putin signed an order creating [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":3746,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[281],"tags":[355,33,179,61,135,65],"class_list":["post-3743","post","type-post","status-publish","format-standard","has-post-thumbnail","category-press-releases","tag-circle-of-kindness","tag-elevidys","tag-elevidys-gene-therapy","tag-gene-therapy","tag-russia","tag-sarepta"],"_links":{"self":[{"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/posts\/3743","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/comments?post=3743"}],"version-history":[{"count":0,"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/posts\/3743\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/media\/3746"}],"wp:attachment":[{"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/media?parent=3743"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/categories?post=3743"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dmdwarrior.com\/tr\/wp-json\/wp\/v2\/tags?post=3743"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}