{"id":4355,"date":"2019-03-04T20:24:00","date_gmt":"2019-03-04T19:24:00","guid":{"rendered":"https:\/\/patientenstimme-sma.de\/?page_id=4355"},"modified":"2026-03-16T21:04:50","modified_gmt":"2026-03-16T20:04:50","slug":"spinraza-jetzt-auch-in-der-tuerkei","status":"publish","type":"post","link":"https:\/\/smartunity.space\/stories\/thema\/spinraza-jetzt-auch-in-der-tuerkei\/","title":{"rendered":"Spinraza jetzt auch in der T\u00fcrkei"},"content":{"rendered":"\n<div class=\"wp-block-group alignwide has-subtle-background-color has-background is-layout-flow wp-block-group-is-layout-flow\">\n<p class=\"tw-text-wide\">Ay\u00e7a \u015eahin mit Bruder Burak Can \u015eahin. Gl\u00fccklich nun endlich auch in der T\u00fcrkei SPINRAZA\u00ae zu bekommen.<\/p>\n\n\n\n<figure class=\"wp-block-image alignwide size-full is-style-tw-shadow\"><img decoding=\"async\" src=\"https:\/\/sma.selfempowered.net\/wp-content\/uploads\/sites\/2\/2019\/03\/AycaSahinwithbrotherfromturkay.jpg\" alt=\"Beitragsbild\" class=\"wp-image-2300\" \/><figcaption class=\"wp-element-caption\">\t\t\t\t\t\t<\/figcaption><\/figure>\n\n\n\n<p class=\"tw-text-wide\">Merhaba ben Ay\u00e7a \u015eahin. Ben ve erkek karde\u015fim Spinal M\u00fcsk\u00fcler Atrofi (SMA) Tip 3 hastalar\u0131y\u0131z. Te\u015fhisimiz kondu\u011funda (14 y\u0131l \u00f6nce) bir tedavi yoktu ama annemiz bize bir tedavinin bulunaca\u011f\u0131na ve bizim o tedaviye eri\u015fece\u011fimize dair bize s\u00f6z verdi. Aral\u0131k 2016&#8217;da, FDA Spinraza (Nusinersen) isimli ilac\u0131 t\u00fcm tip ve ya\u015ftaki SMA hastalar\u0131 i\u00e7in onaylad\u0131. O zamandan beri SMA Benimle Y\u00fcr\u00fc Derne\u011fi olarak yetkililerle, SGK (T\u00fcrk Sosyal Sigortalar) ve Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 ile g\u00f6r\u00fc\u015ft\u00fck. \u0130lk olarak, 2017 yaz\u0131nda SMA Tip 1 hastalar\u0131 i\u00e7in ila\u00e7 kullan\u0131ma sunuldu. Asla pes etmedik ve umudumuzu asla kaybetmedik. Nihayet, 1 \u015eubat 2019&#8217;dan itibaren, \u00e7ocuk ve yeti\u015fkin SMA Tip 2 ve Tip 3 hastalar\u0131 i\u00e7in de Spinraza (Nusinersen) ilac\u0131 SGK kapsam\u0131na al\u0131nd\u0131. Kendimizle gurur duyuyoruz ve t\u00fcm hastalar\u0131n tedavilerine eri\u015febilmelerini diliyoruz.<\/p>\n\n\n\n<p class=\"tw-text-wide\">Hello, I am Ay\u00e7a \u015eahin. I and my brother have Spinal Muscular Atrophy (SMA) Type 3. When we were diagnosed (14 years ago), there was no treatment but our mom promised us that a treatment will be available and we will have an access for it. In December 2016, FDA approved Spinraza (Nusinersen) for all types and all ages of SMA patients. Since then, as SMA Benimle Y\u00fcr\u00fc Association, we talked to authorities, SGK (Turkish Social Insurance), and  Minister of Health. First, the drug became available for SMA Type 1 patients in summer 2017. We never give up and we never lose our hope. Finally, starting from 1 February 2019, Spinraza (Nusinersen) became available for pediatric and adult SMA Type 2 and Type 3 patients. We are very proud of ourselves and we wish that all patients can have an access for their treatments.<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Ay\u00e7a \u015eahin mit Bruder Burak Can \u015eahin. Gl\u00fccklich nun endlich auch in der T\u00fcrkei SPINRAZA\u00ae zu bekommen. Merhaba ben Ay\u00e7a \u015eahin. Ben ve erkek karde\u015fim Spinal M\u00fcsk\u00fcler Atrofi (SMA) Tip 3 hastalar\u0131y\u0131z. Te\u015fhisimiz kondu\u011funda (14 y\u0131l \u00f6nce) bir tedavi yoktu ama annemiz bize bir tedavinin bulunaca\u011f\u0131na ve bizim o tedaviye eri\u015fece\u011fimize dair bize s\u00f6z verdi. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"only-view","format":"standard","meta":{"activitypub_content_warning":"","activitypub_content_visibility":"","activitypub_max_image_attachments":0,"activitypub_interaction_policy_quote":"anyone","activitypub_status":"","footnotes":""},"categories":[1],"tags":[58],"class_list":["post-4355","post","type-post","status-publish","format-standard","hentry","category-thema","tag-smanews"],"_links":{"self":[{"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/posts\/4355","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/comments?post=4355"}],"version-history":[{"count":1,"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/posts\/4355\/revisions"}],"predecessor-version":[{"id":39877,"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/posts\/4355\/revisions\/39877"}],"wp:attachment":[{"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/media?parent=4355"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/categories?post=4355"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/smartunity.space\/stories\/wp-json\/wp\/v2\/tags?post=4355"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}