{"id":40281,"date":"2025-02-27T09:13:37","date_gmt":"2025-02-27T09:13:37","guid":{"rendered":"https:\/\/www.theconservative.online\/strategie-irska-v-oblasti-vzacnych-onemocneni"},"modified":"2025-02-27T09:13:37","modified_gmt":"2025-02-27T09:13:37","slug":"strategie-irska-v-oblasti-vzacnych-onemocneni","status":"publish","type":"post","link":"https:\/\/www.theconservative.online\/cs\/strategie-irska-v-oblasti-vzacnych-onemocneni","title":{"rendered":"Strategie Irska v oblasti vz\u00e1cn\u00fdch onemocn\u011bn\u00ed"},"content":{"rendered":"
Term\u00edn „vz\u00e1cn\u00e1 onemocn\u011bn\u00ed“ je v mnoha ohledech nespr\u00e1vn\u00fdm ozna\u010den\u00edm, proto\u017ee dostate\u010dn\u011b nevystihuje prevalenci onemocn\u011bn\u00ed za\u0159azen\u00fdch do t\u00e9to kategorie.<\/div>\n
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P\u0159esto\u017ee je nap\u0159\u00edklad vz\u00e1cn\u00e9 onemocn\u011bn\u00ed v EU definov\u00e1no jako nemoc nebo porucha, kter\u00e1 postihuje m\u00e9n\u011b ne\u017e 5 z 10 000 obyvatel Evropy, odhaduje se, \u017ee existuje 5 000 a\u017e 8 000 r\u016fzn\u00fdch vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, kter\u00e1 postihuj\u00ed v\u00edce ne\u017e 6 % a\u017e 8 % obyvatel EU.<\/div>\n
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V praxi to znamen\u00e1, \u017ee v EU je vz\u00e1cn\u00fdmi chorobami posti\u017eeno 27 a\u017e 36 milion\u016f lid\u00ed.<\/div>\n
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Podle irsk\u00e9ho N\u00e1rodn\u00edho \u00fa\u0159adu pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (National Rare Diseases Office, NRDO) se odhaduje, \u017ee v ur\u010dit\u00e9 f\u00e1zi \u017eivota se vz\u00e1cn\u00e9 onemocn\u011bn\u00ed vyskytne u 300 000 lid\u00ed. V irsk\u00e9 zdravotn\u00ed politice se skute\u010dn\u011b ji\u017e dlouho uzn\u00e1v\u00e1, \u017ee a\u010dkoli mohou b\u00fdt ur\u010dit\u00e9 skupiny vz\u00e1cn\u00fdch onemocn\u011bn\u00ed zahrnuty do zaveden\u00fdch model\u016f zad\u00e1v\u00e1n\u00ed zak\u00e1zek (nap\u0159. vz\u00e1cn\u00e1 epilepsie v r\u00e1mci klinick\u00fdch program\u016f neurologie\/epilepsie), „kohorty skupin velmi vz\u00e1cn\u00fdch onemocn\u011bn\u00ed jsou \u010dasto \u0161patn\u011b viditeln\u00e9 s velmi \u0161patn\u00fdmi n\u00e1rodn\u00edmi syst\u00e9my k\u00f3dov\u00e1n\u00ed a identifikace a jsou nedostate\u010dn\u011b financov\u00e1ny a financov\u00e1ny na n\u00e1rodn\u00ed \u00farovni“. <\/div>\n
To v\u0161ak neznamen\u00e1, \u017ee by slo\u017eit\u00e9 s\u00edti ot\u00e1zek t\u00fdkaj\u00edc\u00edch se vz\u00e1cn\u00fdch onemocn\u011bn\u00ed nebyla v\u011bnov\u00e1na v\u00fdznamn\u00e1 politick\u00e1 pozornost. Z historick\u00e9ho hlediska v\u0161ak tento proces do zna\u010dn\u00e9 m\u00edry \u0159\u00eddily organizace, kter\u00e9 vedly kampan\u011b, jako je nap\u0159\u00edklad The Genetic and Rare Disorders Organisation (GRDO). Tato nevl\u00e1dn\u00ed organizace je nyn\u00ed zn\u00e1m\u00e1 pod n\u00e1zvem Rare Diseases Ireland a \u00fa\u010dinn\u011b polo\u017eila z\u00e1klady organizovan\u00e9 advokacie pacient\u016f v Irsku v t\u00e9to oblasti. <\/div>\n
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GRDO, jak se tehdy jmenovala, byla zalo\u017eena v roce 1988. Jako sv\u016fj prvn\u00ed \u00fasp\u011bch uv\u00e1d\u00ed \u00fasp\u011b\u0161n\u00e9 z\u00edsk\u00e1n\u00ed specializovan\u00e9ho n\u00e1rodn\u00edho centra pro l\u00e9ka\u0159skou genetiku (NMCG), kter\u00e9 bylo z\u0159\u00edzeno v d\u011btsk\u00e9 nemocnici Panny Marie v Dublinu v roce 1994. Toto centrum se stalo hlavn\u00edm irsk\u00fdm st\u0159ediskem pro diagnostiku a l\u00e9\u010dbu vz\u00e1cn\u00fdch genetick\u00fdch onemocn\u011bn\u00ed, co\u017e znamenalo prvn\u00ed v\u00fdznamnou institucion\u00e1ln\u00ed reakci Irska na vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. <\/div>\n
N\u00e1sledn\u011b se Irsko stalo \u010dlenem EURORDIS (Evropsk\u00e1 organizace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed), co\u017e byl krok, kter\u00fd spojil irsk\u00e9 obh\u00e1jce s \u0161ir\u0161\u00ed evropskou s\u00edt\u00ed a ovlivnil politiky EU, jako je na\u0159\u00edzen\u00ed o l\u00e9\u010div\u00fdch p\u0159\u00edpravc\u00edch pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed z roku 1999. T\u00edm se rychle roz\u0161\u00ed\u0159il p\u0159\u00edstup Irska k mezin\u00e1rodn\u00edm odborn\u00fdm znalostem a zdroj\u016fm pro obhajobu. <\/div>\n
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V lednu 2011 se v Irsku konala n\u00e1rodn\u00ed konference na vysok\u00e9 \u00farovni ve spolupr\u00e1ci s EUROPLANem, na kter\u00e9 se se\u0161li pacienti, pacientsk\u00e9 organizace a zdravotn\u00edci. Konference byla pozoruhodn\u00e1 t\u00edm, \u017ee sice uznala pozitivn\u00ed kroky, kter\u00e9 byly u\u010din\u011bny, ale z\u00e1rove\u0148 v\u00fdslovn\u011b vyzvala k z\u00e1sadn\u00ed reform\u011b irsk\u00e9ho zdravotnictv\u00ed, aby bylo schopno zajistit lep\u0161\u00ed p\u0159\u00edstup ke kvalitn\u00edm slu\u017eb\u00e1m souvisej\u00edc\u00edm se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi. <\/div>\n
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Po setk\u00e1n\u00ed ve Farmleigh n\u00e1sledovalo v roce 2012 zad\u00e1n\u00ed ve\u0159ejn\u00e9 on-line konzultace „Have Your Say“ (Vyj\u00e1d\u0159ete se) ze strany Health Service Executive (HSE).<\/div>\n
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Z konzulta\u010dn\u00edho procesu vyplynuly n\u00e1sleduj\u00edc\u00ed kl\u00ed\u010dov\u00e9 body: opo\u017ed\u011bn\u00e9 stanoven\u00ed diagn\u00f3zy, obt\u00ed\u017ee praktick\u00fdch l\u00e9ka\u0159\u016f v p\u0159\u00edstupu ke kvalitn\u00edm informac\u00edm, nedostatek vhodn\u00fdch diagnostick\u00fdch slu\u017eeb a chyb\u011bj\u00edc\u00ed syst\u00e9m pro p\u0159ezkoum\u00e1n\u00ed diagnostick\u00e9ho postupu. Nedostate\u010dn\u00e9 pov\u011bdom\u00ed o vz\u00e1cn\u00fdch onemocn\u011bn\u00edch, kter\u00e9 je patrn\u00e9 na v\u0161ech \u00farovn\u00edch syst\u00e9mu zdravotn\u00ed p\u00e9\u010de, jako\u017e i v souvislosti s p\u0159\u00edstupem k ve\u0159ejn\u00fdm a soukrom\u00fdm slu\u017eb\u00e1m a n\u00e1rok\u016fm v r\u00e1mci klinick\u00e9ho prost\u0159ed\u00ed i mimo n\u011bj. Lep\u0161\u00ed p\u0159\u00edstup ke specializovan\u00e9 p\u00e9\u010di a zlep\u0161en\u00ed p\u0159esn\u00e9 a v\u010dasn\u00e9 diagnostiky byly pova\u017eov\u00e1ny za oblasti, kter\u00e9 by mohly pacient\u016fm se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi v Irsku p\u0159in\u00e9st nejv\u011bt\u0161\u00ed prosp\u011bch. <\/div>\n
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Form\u00e1ln\u00ed n\u00e1rodn\u00ed r\u00e1mec pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed v\u0161ak v Irsku vznikl a\u017e v roce 2013, kdy byl z\u0159\u00edzen N\u00e1rodn\u00ed klinick\u00fd program pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed p\u0159i HSE. C\u00edlem tohoto programu bylo zlep\u0161it koordinaci a poskytov\u00e1n\u00ed p\u00e9\u010de pacient\u016fm se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi v cel\u00e9m Irsku. Kriticky d\u016fle\u017eit\u00fdm doporu\u010den\u00edm, kter\u00e9 N\u00e1rodn\u00ed klinick\u00fd program p\u0159edlo\u017eil, byla nal\u00e9hav\u00e1 pot\u0159eba zajistit, aby registry specifick\u00e9 pro jednotliv\u00e1 onemocn\u011bn\u00ed, a to jak st\u00e1vaj\u00edc\u00ed, tak i rozv\u00edjej\u00edc\u00ed se, pokra\u010dovaly a\u017e do \u00fapln\u00e9ho zaveden\u00ed strategie elektronick\u00e9ho zdravotnictv\u00ed ve v\u0161ech oblastech zdravotn\u00ed p\u00e9\u010de v Irsku. Bylo tak\u00e9 d\u016frazn\u011b doporu\u010deno, aby tyto registry byly p\u0159ipraveny na budoucnost, pokud jde o technologie a m\u011bn\u00edc\u00ed se demografii, a aby byly integrov\u00e1ny na n\u00e1rodn\u00ed \u00farovni a v r\u00e1mci evropsk\u00fdch registr\u016f v\u010detn\u011b registr\u016f ERN. <\/div>\n
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Opat\u0159en\u00ed irsk\u00e9 vl\u00e1dy pokra\u010dovala i v roce 2014, kdy byl zah\u00e1jen prvn\u00ed irsk\u00fd n\u00e1rodn\u00ed pl\u00e1n pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed na obdob\u00ed 2014-2018.<\/div>\n
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Pl\u00e1n obsahoval 46 rozs\u00e1hl\u00fdch doporu\u010den\u00ed zam\u011b\u0159en\u00fdch na diagnostiku, zp\u016fsoby l\u00e9\u010dby a evropskou spolupr\u00e1ci (nap\u0159. evropsk\u00e9 referen\u010dn\u00ed s\u00edt\u011b – ERN). Pl\u00e1n rovn\u011b\u017e poskytl strategick\u00fd pl\u00e1n sm\u011b\u0159uj\u00edc\u00ed k realizaci N\u00e1rodn\u00edho \u00fa\u0159adu pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (NRDO), kter\u00fd byl nakonec z\u0159\u00edzen v roce 2015. <\/div>\n
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NRDO uv\u00e1d\u00ed jako svou hlavn\u00ed roli „koordina\u010dn\u00ed centrum“ a hlavn\u00ed kontaktn\u00ed osobu a hybnou s\u00edlu iniciativ a projekt\u016f v oblasti vz\u00e1cn\u00fdch onemocn\u011bn\u00ed v Irsku v souladu s N\u00e1rodn\u00edm pl\u00e1nem pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed.<\/div>\n
D\u00e1le uv\u00e1d\u00ed, \u017ee jej\u00edm c\u00edlem je podporovat lidi se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi a jejich rodiny zlep\u0161en\u00edm dostupnosti a kvality slu\u017eeb, konkr\u00e9tn\u011b prost\u0159ednictv\u00edm \u0159ady slu\u017eeb, v\u010detn\u011b poskytov\u00e1n\u00ed informac\u00ed zalo\u017een\u00fdch na d\u016fkazech a p\u016fsoben\u00ed jako hostitel a kur\u00e1tor Orphanet Ireland.<\/div>\n
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V\u00fdznam s\u00edt\u011b Orphanet lze p\u0159ece\u0148ovat. Byl zalo\u017een ve Francii v roce 1997 a stal se hlavn\u00edm referen\u010dn\u00edm zdrojem informac\u00ed o vz\u00e1cn\u00fdch onemocn\u011bn\u00edch. V roce 2000 se tato iniciativa stala evropsk\u00fdm projektem a v sou\u010dasn\u00e9 dob\u011b je podporov\u00e1na granty Evropsk\u00e9 komise. Nyn\u00ed zahrnuje s\u00ed\u0165 41 zem\u00ed v r\u00e1mci Evropy i cel\u00e9ho sv\u011bta. <\/div>\n
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V r\u00e1mci snahy Irska nav\u00e1zat na dosa\u017een\u00fd pokrok zve\u0159ejnil HSE v roce 2019 Model p\u00e9\u010de o vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. Model p\u00e9\u010de v podstat\u011b nast\u00ednil osv\u011bd\u010den\u00e9 postupy pro poskytov\u00e1n\u00ed integrovan\u00e9 p\u00e9\u010de pacient\u016fm se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi a z\u00e1rove\u0148 podnikl v\u00fdznamn\u00e9 kroky k pos\u00edlen\u00ed praktick\u00e9 realizace pl\u00e1nu na obdob\u00ed 2014-2018. <\/div>\n
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Jedn\u00edm z nejd\u016fle\u017eit\u011bj\u0161\u00edch prvk\u016f modelu p\u00e9\u010de byla pozornost v\u011bnovan\u00e1 v\u00fdslovn\u00e9 pot\u0159eb\u011b vypracovat pl\u00e1n p\u0159echodu d\u011bt\u00ed se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi do multidisciplin\u00e1rn\u00edch a c\u00edlen\u00fdch slu\u017eeb pro dosp\u011bl\u00e9.<\/div>\n
V letech 2024 a 2025 do\u0161lo k \u0159ad\u011b dal\u0161\u00edch pozitivn\u00edch zm\u011bn v oblasti l\u00e9\u010dby vz\u00e1cn\u00fdch onemocn\u011bn\u00ed a slu\u017eeb, za kter\u00e9 lze Irsko pochv\u00e1lit. Pat\u0159\u00ed mezi n\u011b v\u016fbec prvn\u00ed zm\u00ednka o vz\u00e1cn\u00fdch onemocn\u011bn\u00edch ve vl\u00e1dn\u00edm rozpo\u010dtu. V rozpo\u010dtu na rok 2025 bylo na vz\u00e1cn\u00e1 onemocn\u011bn\u00ed vy\u010dlen\u011bno 1,5 milionu eur (v roce 2026 se \u010d\u00e1stka zv\u00fd\u0161\u00ed na 3 miliony eur). <\/div>\n
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Krom\u011b toho bylo p\u0159ed v\u0161eobecn\u00fdmi volbami v roce 2024 vy\u010dlen\u011bno dal\u0161\u00edch 5 milion\u016f eur na vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. T\u00edm bylo zaji\u0161t\u011bno, \u017ee se slu\u017eby pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed posunuly ze situace, kdy nebyly do vz\u00e1cn\u00fdch onemocn\u011bn\u00ed vy\u010dlen\u011bny \u017e\u00e1dn\u00e9 investice, k celkov\u00e9mu ro\u010dn\u00edmu opakuj\u00edc\u00edmu se rozpo\u010dtu ve v\u00fd\u0161i 8 milion\u016f EUR. <\/div>\n
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O\u010dek\u00e1v\u00e1 se tak\u00e9, \u017ee v roce 2025 bude dokon\u010dena nov\u00e1 n\u00e1rodn\u00ed strategie pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. Advoka\u010dn\u00ed skupiny zastupuj\u00edc\u00ed osoby \u017eij\u00edc\u00ed se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi uvedly, \u017ee jsou p\u0159esv\u011bd\u010deny, \u017ee nov\u00e1 strategie a pl\u00e1n implementace poskytnou pl\u00e1n, kter\u00fd n\u00e1m umo\u017en\u00ed realizovat dal\u0161\u00ed pozitivn\u00ed zm\u011bny; <\/div>\n
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V komunit\u011b obh\u00e1jc\u016f vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se v\u0161ak objevilo tak\u00e9 rozs\u00e1hl\u00e9 zklam\u00e1n\u00ed. Ta se zam\u011b\u0159ila na zpo\u017ed\u011bn\u00ed p\u0159i zaji\u0161\u0165ov\u00e1n\u00ed \u0161esti spolupracovn\u00edk\u016f pro genomick\u00e9 zdroje, kte\u0159\u00ed maj\u00ed b\u00fdt zam\u011bstn\u00e1ni na odd\u011blen\u00ed klinick\u00e9 genetiky v CHI v Crumlinu. <\/div>\n
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Tato situace vznikla \u010d\u00e1ste\u010dn\u011b v d\u016fsledku moratoria na n\u00e1bor zam\u011bstnanc\u016f, kter\u00e9 vyhl\u00e1sil gener\u00e1ln\u00ed \u0159editel HSE na p\u0159ij\u00edm\u00e1n\u00ed administrativn\u00edch pracovn\u00edk\u016f.<\/div>\n
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M\u016f\u017eeme \u0159\u00edci, \u017ee a\u010dkoli Irsko prok\u00e1zalo v\u00fdznamn\u00e9 a rozhodn\u00e9 zam\u011b\u0159en\u00ed zdravotn\u00ed politiky na ot\u00e1zky t\u00fdkaj\u00edc\u00ed se diagnostiky a informovanosti o vz\u00e1cn\u00fdch onemocn\u011bn\u00edch, st\u00e1le existuj\u00ed z\u0159eteln\u00e9 mezery, pokud jde o poskytov\u00e1n\u00ed odborn\u00e9ho person\u00e1lu. Probl\u00e9my p\u00e9\u010de o vz\u00e1cn\u00e1 onemocn\u011bn\u00ed v Irsku nav\u00edc p\u0159esahuj\u00ed finan\u010dn\u00ed a person\u00e1ln\u00ed omezen\u00ed. Nad\u00e1le existuje z\u00e1sadn\u00ed pot\u0159eba lep\u0161\u00ed integrace odborn\u00fdch znalost\u00ed o vz\u00e1cn\u00fdch onemocn\u011bn\u00edch do \u0161ir\u0161\u00edho syst\u00e9mu zdravotn\u00ed p\u00e9\u010de, kter\u00e1 by zajistila, \u017ee odborn\u00edci v prim\u00e1rn\u00ed p\u00e9\u010di budou vybaveni pro v\u010dasnou identifikaci a l\u00e9\u010dbu vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Nav\u00edc p\u0159\u00edstup k nejmodern\u011bj\u0161\u00edm l\u00e9\u010debn\u00fdm postup\u016fm – zejm\u00e9na genov\u00fdm terapi\u00edm – z\u016fst\u00e1v\u00e1 spornou ot\u00e1zkou, nebo\u0165 pomal\u00e9 schvalovac\u00ed procesy a vysok\u00e9 n\u00e1klady \u010dasto oddaluj\u00ed z\u00e1kroky, kter\u00e9 m\u011bn\u00ed \u017eivot. P\u0159esto\u017ee ned\u00e1vn\u00e9 rozpo\u010dtov\u00e9 p\u0159\u00edd\u011bly znamenaj\u00ed pokrok, dlouhodob\u00e1 udr\u017eitelnost bude vy\u017eadovat struktur\u00e1ln\u00ed reformy, pos\u00edlen\u00ed financov\u00e1n\u00ed v\u00fdzkumu a pru\u017en\u011bj\u0161\u00ed reakci na m\u011bn\u00edc\u00ed se situaci v oblasti l\u00e9\u010dby a l\u00e9\u010dby vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. <\/div>\n","protected":false},"excerpt":{"rendered":"

Term\u00edn „vz\u00e1cn\u00e1 onemocn\u011bn\u00ed“ je v mnoha ohledech nespr\u00e1vn\u00fdm ozna\u010den\u00edm, proto\u017ee dostate\u010dn\u011b nevystihuje prevalenci onemocn\u011bn\u00ed za\u0159azen\u00fdch do t\u00e9to kategorie. P\u0159esto\u017ee je nap\u0159\u00edklad vz\u00e1cn\u00e9 onemocn\u011bn\u00ed v EU definov\u00e1no jako nemoc nebo porucha, kter\u00e1 postihuje m\u00e9n\u011b ne\u017e 5 z 10 000 obyvatel Evropy, odhaduje se, \u017ee existuje 5 000 a\u017e 8 000 r\u016fzn\u00fdch vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, kter\u00e1 postihuj\u00ed v\u00edce […]<\/p>\n","protected":false},"author":50,"featured_media":40239,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[199],"tags":[],"editorial-positions":[],"regions":[],"types":[449],"class_list":["post-40281","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi","types-opinion-cs"],"yoast_head":"\nStrategie Irska v oblasti vz\u00e1cn\u00fdch onemocn\u011bn\u00ed - The Conservative<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.theconservative.online\/cs\/strategie-irska-v-oblasti-vzacnych-onemocneni\" \/>\n<meta property=\"og:locale\" content=\"cs_CZ\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Strategie Irska v oblasti vz\u00e1cn\u00fdch onemocn\u011bn\u00ed - The Conservative\" \/>\n<meta property=\"og:description\" content=\"Term\u00edn „vz\u00e1cn\u00e1 onemocn\u011bn\u00ed“ je v mnoha ohledech nespr\u00e1vn\u00fdm ozna\u010den\u00edm, proto\u017ee dostate\u010dn\u011b nevystihuje prevalenci onemocn\u011bn\u00ed za\u0159azen\u00fdch do t\u00e9to kategorie. 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