{"id":2158,"date":"2021-05-15T15:11:55","date_gmt":"2021-05-15T14:11:55","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/?p=2158"},"modified":"2021-05-15T15:12:00","modified_gmt":"2021-05-15T14:12:00","slug":"narodny-program-zdravotnej-starostlivosti-o-pacientov-so-zriedkavymi-chorobami-do-roku-2030","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/narodny-program-zdravotnej-starostlivosti-o-pacientov-so-zriedkavymi-chorobami-do-roku-2030\/2158","title":{"rendered":"N\u00e1rodn\u00fd program zdravotnej starostlivosti o pacientov so zriedkav\u00fdmi chorobami do roku 2030"},"content":{"rendered":"\n<p><\/p>\n\n\n\n<p><em>N\u00e1rodn\u00fd program zdravotnej starostlivosti o pacientov so zriedkav\u00fdmi chorobami do roku 2030 <\/em>(\u010falej len \u201eNP 2030\u201c) bol vypracovan\u00fd Komisiou Ministerstva zdravotn\u00edctva Slovenskej republiky pre zriedkav\u00e9 choroby (Rare Diseases \u2013 RD; \u010falej len \u201eKomisia\u201c) na z\u00e1klade \u00falohy z uznesenia vl\u00e1dy Slovenskej republiky \u010d.724\/2020 z 18.11.2020.<\/p>\n\n\n\n<p>NP2030 svoj\u00edm obsahov\u00fdm zameran\u00edm nadv\u00e4zuje na N\u00e1rodn\u00fd program rozvoja zdravotnej starostlivosti o pacientov so zriedkav\u00fdmi chorobami v SR na obdobie rokov 2016 \u2013 2020. S\u00fa\u010das\u0165ou NP 2030 je aj ak\u010dn\u00fd pl\u00e1n, rozpracovan\u00fd na podmienky rezortu zdravotn\u00edctva na obdobie rokov 2021 a 2022 (\u010falej len \u201eAP\u201c). AP bude aktualizovan\u00fd v dvojro\u010dn\u00fdch intervaloch vo vz\u0165ahu k aktu\u00e1lnemu objemu uvo\u013enen\u00fdch finan\u010dn\u00fdch prostriedkov na praktick\u00fa realiz\u00e1ciu N\u00e1rodn\u00e9ho programu. Eur\u00f3pska komisia podporuje aktu\u00e1lne t\u00fato oblas\u0165 v r\u00e1mci European Joint Programme on Rare Diseases a \u0161pecifick\u00e9ho programu Eur\u00f3pskych referen\u010dn\u00fdch siet\u00ed. Vytv\u00e1ra sa priestor ako \u010derpa\u0165 eur\u00f3pske finan\u010dn\u00e9 prostriedky na inov\u00e1cie aj v oblasti zdravotn\u00edctva.&nbsp;<\/p>\n\n\n\n<h1 class=\"wp-block-heading\">\u00davod<\/h1>\n\n\n\n<p>Doteraj\u0161ie eur\u00f3pske iniciat\u00edvy identifikovali nieko\u013eko z\u00e1sadn\u00fdch probl\u00e9mov v oblasti zriedkav\u00fdch chor\u00f4b (\u010falej len \u201eZCH\u201c):<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>nedostato\u010dn\u00e9 povedomie o ZCH u laickej a aj u zdravotn\u00edckej verejnosti<\/li><li>nedostato\u010dn\u00e1 implement\u00e1cia poznatkov o ZCH do syst\u00e9mu zdravotnej starostlivosti a n\u00e1ro\u010dn\u00e9 vytv\u00e1ranie organiza\u010dn\u00fdch podmienok pre starostlivos\u0165 o pacientov so ZCH<\/li><li>z\u00e1va\u017en\u00e9 nedostatky v dostupnosti modernej diagnostiky ZCH z d\u00f4vodu extr\u00e9mnej zriedkavosti v\u00fdskytu, pri\u010dom chybn\u00e9 alebo oneskoren\u00e9 diagnostikovanie ZCH vedie \u010dasto k nezvratn\u00e9mu po\u0161kodeniu zdravia alebo a\u017e k smrti pacienta,<\/li><li>teritori\u00e1lna nerovnomernos\u0165 dostupnosti kvalitnej zdravotnej starostlivosti a soci\u00e1lnej starostlivosti (\u0161pecifick\u00e9 n\u00e1roky na podporn\u00fa a o\u0161etrovate\u013esk\u00fa starostlivos\u0165, ako aj na \u0161pecializovan\u00e9 soci\u00e1lne slu\u017eby)<\/li><li>ve\u013emi obmedzen\u00fd v\u00fdber liekov pre lie\u010dbu ZCH, napriek enormn\u00e9mu \u00fasiliu a vynalo\u017een\u00fdm invest\u00edci\u00e1m do v\u00fdskumu inovat\u00edvnych liekov a personalizovanej medic\u00edny<\/li><li>ve\u013ek\u00e9 rozdiely v dostupnosti lie\u010dby pre ZCH medzi \u010dlensk\u00fdmi \u0161t\u00e1tmi E\u00da, v mnoh\u00fdch pr\u00edpadoch najm\u00e4 nedostupnosti lie\u010dby, \u010do je aj pr\u00edpad Slovenskej republiky<\/li><li>n\u00e1ro\u010dnos\u0165 v\u00fdskumu jednotliv\u00fdch typov ZCH z d\u00f4vodu extr\u00e9mnej heterogenity<\/li><li>nedostato\u010dn\u00e1 identifik\u00e1cia jednotliv\u00fdch ZCH v r\u00e1mci Medzin\u00e1rodnej klasifik\u00e1cie chor\u00f4b, verzia 10 (\u010falej len \u201eMKCH 10\u201c), \u010do znemo\u017e\u0148uje jednoduch\u00fa registr\u00e1ciu ZCH v zdravotn\u00edckych \u0161tatistik\u00e1ch a nadv\u00e4zuj\u00facu organiz\u00e1ciu \u0161pecializovanej zdravotnej starostlivosti, do praxe v\u0161ak prich\u00e1dza MKCH 11, pod\u013ea ktorej je mo\u017en\u00e9 klasifikova\u0165 a\u017e 5400 ZCH<\/li><li>nedostatky v zbere \u00fadajov na n\u00e1rodnej a region\u00e1lnej \u00farovni, vo vytv\u00e1ran\u00ed epidemiologick\u00fdch alebo pracovn\u00fdch registrov ZCH<\/li><li>nedostato\u010dn\u00e9 organizovanie medzin\u00e1rodnej spolupr\u00e1ce v praktickom poskytovan\u00ed starostlivosti o pacientov so ZCH<\/li><\/ul>\n\n\n\n<p>N\u00e1rodn\u00fd program zdravotnej starostlivosti o pacientov so ZCH chce prispie\u0165 v obdob\u00ed desiatich rokov k rozvoju skvalit\u0148ovania starostlivosti aj podporovan\u00edm nosn\u00fdch organiza\u010dn\u00fdch \u0161trukt\u00far, expert\u00edznych pracov\u00edsk pre ZCH, podporou zapojenia expert\u00edznych pracov\u00edsk do spolupr\u00e1ce s ERN (Eur\u00f3pske referen\u010dn\u00e9 siete). V uvedenom obdob\u00ed o\u010dak\u00e1vame \u010fal\u0161ie roz\u0161irovanie a skvalit\u0148ovanie diagnostiky ZCH aj najnov\u0161\u00edmi diagnostick\u00fdmi met\u00f3dami a n\u00e1ro\u010dn\u00e9 rie\u0161enia problematiky inovat\u00edvnej lie\u010dby pacientov so ZCH. <strong>Zdravotn\u00e1 starostlivos\u0165 o pacientov so ZCH je integr\u00e1lnou s\u00fa\u010das\u0165ou organiz\u00e1cie zdravotn\u00edctva v SR<\/strong>, jej \u0161pecifikum vypl\u00fdva z dvoch charakterist\u00edk: enormn\u00fd po\u010det doteraz rozl\u00ed\u0161en\u00fdch ZCH (6171 typov identifikovan\u00fdch do roku 2019 pod\u013ea ORPHANETu) a minim\u00e1lny po\u010det pacientov v regi\u00f3ne (kraj, Slovensko). Z\u00e1rove\u0148 je s\u00fa\u010det v\u0161etk\u00fdch pacientov so ZCH minim\u00e1lne 3,5% popul\u00e1cie, \u010do pre Slovensko znamen\u00e1 cca 200 000 os\u00f4b (Wakap et al.,2019).&nbsp;&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 1<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Rozv\u00edja\u0165 informovanos\u0165 verejnosti o problematike ZCH:<\/h2>\n\n\n\n<p>Povedomie laickej verejnosti o problematike ZCH sa v ostatn\u00fdch rokoch zvy\u0161uje. Roz\u0161irovanie vedomost\u00ed a inform\u00e1ci\u00ed o ZCH je z\u00e1kladn\u00fdm predpokladom pre rozvoj starostlivosti o pacientov so ZCH, nako\u013eko evidujeme r\u00fdchly v\u00fdvoj diagnostiky a aj mo\u017enost\u00ed lie\u010dby. Vysok\u00e9 povedomie zvy\u0161uje tie\u017e citlivos\u0165 spolo\u010dnosti na inkl\u00faziu os\u00f4b so zdravotn\u00fdm postihnut\u00edm do komunity a ich akt\u00edvnu particip\u00e1ciu v spolo\u010dnosti. V\u00fdznamn\u00fdm pr\u00ednosom pre rozvoj starostlivosti o pacientov so ZCH je \u010dinnos\u0165 Slovenskej aliancie zriedkav\u00fdch chor\u00f4b (\u010falej len \u201eSAZCH\u201c) a spolupr\u00e1ca s odborn\u00fdmi spolo\u010dnos\u0165ami Slovenskej lek\u00e1rskej spolo\u010dnosti. Praktick\u00e9 kroky podpory spo\u010d\u00edvaj\u00fa v celej \u0161k\u00e1le masmedi\u00e1lnej komunik\u00e1cie: konferencie, semin\u00e1re, workshopy, medi\u00e1lne kampane, printov\u00e9 materi\u00e1ly, informa\u010dn\u00e9 materi\u00e1ly, internetov\u00e9 str\u00e1nky, zahrani\u010dn\u00e9 internetov\u00e9 zdroje (napr\u00edklad Orphanet, RARE 2030, EURORDIS, EUROPLAN), v\u00fdznamn\u00e9 v\u00fdro\u010dn\u00e9 aktivity (napr.: Medzin\u00e1rodn\u00fd de\u0148 zriedkav\u00fdch chor\u00f4b, N\u00e1rodn\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch, Izakovi\u010dov memori\u00e1l). Ak\u010dn\u00e9 pl\u00e1ny MZ SR na realiz\u00e1ciu NP 2030 m\u00f4\u017eu niektor\u00e9 v\u00fdznamn\u00e9 a spolo\u010densky d\u00f4le\u017eit\u00e9 akcie vzdel\u00e1vac\u00edch aktiv\u00edt finan\u010dne podpori\u0165.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 2<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Roz\u0161irova\u0165 vzdel\u00e1vanie odbornej verejnosti o ZCH:<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\">&nbsp;\u010eal\u0161ie vzdel\u00e1vanie zdravotn\u00edckych pracovn\u00edkov<\/h3>\n\n\n\n<p>Do organizovan\u00fdch vzdel\u00e1vac\u00edch programov \u010fal\u0161ieho vzdel\u00e1vania zdravotn\u00edckych pracovn\u00edkov r\u00f4znych typov, najm\u00e4 u \u0161pecializa\u010dn\u00fdch odborov v povolan\u00ed lek\u00e1r, s najv\u00e4\u010d\u0161\u00edm v\u00fdskytom problematiky ZCH ako s\u00fa: lek\u00e1rska genetika, pediatria, klinick\u00e1 onkol\u00f3gia, neurol\u00f3gia, oftalmol\u00f3gia, kardiol\u00f3gia, hematol\u00f3gia a transf\u00faziol\u00f3gia, endokrinol\u00f3gia, klinick\u00e1 imunol\u00f3gia a alergol\u00f3gia, reumatol\u00f3gia, psychiatria a \u010fal\u0161ie, ako aj pre zdravotn\u00edcke povolanie sestra a fyzioterapeut, m\u00e1me z\u00e1ujem v\u00fdraznej\u0161ie upriami\u0165 pozornos\u0165 na problematiku ZCH.&nbsp;<\/p>\n\n\n\n<p>Za potrebn\u00fa t\u00e9mu vzdel\u00e1vania v oblasti ZCH pova\u017eujeme najm\u00e4 modern\u00fa laborat\u00f3rnu diagnostiku, ktor\u00e1 umo\u017e\u0148uje roz\u0161\u00edrenie a skvalitnenie diagnostiky, lie\u010dby a prevencie. Pr\u00edkladom je program volite\u013en\u00e9ho predmetu o ZCH, ktor\u00fd zaviedla Farmaceutick\u00e1 fakulta v akademickom roku 2020\/2021. Program m\u00f4\u017ee napom\u00f4c\u0165 k zavedeniu problematiky ZCH do vzdel\u00e1vania zdravotn\u00edckych pracovn\u00edkov.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Konferencie s problematikou ZCH<\/h3>\n\n\n\n<p>Konferencie, semin\u00e1re, workshopy a medzin\u00e1rodn\u00e9 konferencie s\u00fa z\u00e1kladn\u00fdm n\u00e1strojom na aktualiz\u00e1ciu a rozvoj vedomost\u00ed, aktiv\u00edt a poznania problematiky ZCH. Je vhodn\u00e9 vyu\u017e\u00edva\u0165 aj rozsiahle aktivity medzin\u00e1rodn\u00fdch organiz\u00e1ci\u00ed a \u00fa\u010das\u0165 slovensk\u00fdch z\u00e1stupcov na ich pr\u00e1ci.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 3<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Roz\u0161irova\u0165 a skvalit\u0148ova\u0165 diagnostiku, lie\u010dbu a starostlivos\u0165 o pacientov so ZCH:<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\">Roz\u0161irovanie laborat\u00f3rnej diagnostiky zriedkav\u00fdch chor\u00f4b<\/h3>\n\n\n\n<p>Pokra\u010duj\u00faci r\u00fdchly rozvoj laborat\u00f3rnej diagnostiky ZCH prin\u00e1\u0161a r\u00fdchlej\u0161iu a presnej\u0161iu diagnostiku. Z\u00e1rove\u0148 sa zlep\u0161uje dostupnos\u0165 najnov\u0161\u00edch diagnostick\u00fdch met\u00f3d aj v SR. Je to v\u0161ak spojen\u00e9 s n\u00e1rokmi na financovanie. Rie\u0161enie probl\u00e9mu finan\u010dnej n\u00e1ro\u010dnosti a diagnostickej efektivity je z\u00e1kladom praktickej dostupnosti ve\u013emi z\u00e1sadn\u00e9ho kroku v starostlivosti o pacientov so ZCH a to presnej diagn\u00f3zy<strong>. Rozpor medzi finan\u010dn\u00fdmi zdrojmi a z\u00e1konn\u00fdmi n\u00e1rokmi na diagnostiku ZCH je potrebn\u00e9 rie\u0161i\u0165 v s\u00falade s \u00dastavou SR a <\/strong>zdravotn\u00edckymi z\u00e1konmi (ako napr. z\u00e1kony \u010d. 576\/2004 Z. z.o zdravotnej starostlivosti, slu\u017eb\u00e1ch s\u00favisiacich s poskytovan\u00edm zdravotnej starostlivosti a o zmene a doplnen\u00ed niektor\u00fdch z\u00e1konov, 362\/2011 Z. z. o liekoch a zdravotn\u00edckych pom\u00f4ckach a o zmene a doplnen\u00ed niektor\u00fdch z\u00e1konov, \u010d. 363\/2011 Z. z. o rozsahu a podmienkach \u00fahrady liekov, zdravotn\u00edckych pom\u00f4cok a dietetick\u00fdch potrav\u00edn na z\u00e1klade verejn\u00e9ho zdravotn\u00e9ho poistenia a o zmene a doplnen\u00ed niektor\u00fdch z\u00e1konov, \u010d. 580\/2004 Z. z. o zdravotnom poisten\u00ed a o zmene a doplnen\u00ed z\u00e1kona \u010d. 95\/2002 Z. z. o pois\u0165ovn\u00edctve a o zmene a doplnen\u00ed niektor\u00fdch z\u00e1konov, \u010d. 95\/2002 Z. z. o pois\u0165ovn\u00edctve a o zmene a doplnen\u00ed niektor\u00fdch z\u00e1konov,&#8230; \u010falej ako \u201ezdravotn\u00edcke z\u00e1kony\u201c). Podpora uplat\u0148ovania najnov\u0161\u00edch diagnostick\u00fdch met\u00f3d je pre zdravotn\u00edctvo z\u00e1sadn\u00e1 a preto je d\u00f4le\u017eit\u00e9 disponova\u0165 dostato\u010dn\u00fdmi informa\u010dn\u00fdmi zdrojmi o dostupnosti laborat\u00f3rnej diagnostiky ZCH v Slovenskej republike. R\u00fdchly v\u00fdvoj met\u00f3d genetick\u00e9ho testovania s vysokou rozli\u0161ovacou schopnos\u0165ou (napr.: arrayCGH= array karyotypovanie, mas\u00edvne paraleln\u00e9 sekvenovanie, next generation sequencing, sekvenovanie panelov g\u00e9nov, celoex\u00f3mov\u00e9 sekvenovanie, celogen\u00f3mov\u00e9 sekvenovanie) nach\u00e1dza enormn\u00e9 uplatnenie v diagnostike dedi\u010dn\u00fdch a genetick\u00fdch chor\u00f4b celosvetovo a rovnako aj v slovenskej praxi. Vo v\u0161eobecnosti je nevyhnutn\u00e9 podporova\u0165 implement\u00e1ciu t\u00fdchto met\u00f3d, ako aj \u010fal\u0161\u00edch nov\u00fdch diagnostick\u00fdch met\u00f3d, napr\u00edklad tandemovej hmotnostnej spektrometrie, ako v\u00fdkonnej a vysoko senzit\u00edvnej technol\u00f3gie biochemickej diagnostiky, do celej \u0161\u00edrky problematiky ZCH. Tak ako m\u00e1 ka\u017ed\u00fd ob\u010dan pr\u00e1vo na zdravotn\u00fa starostlivos\u0165, explicitne z toho vypl\u00fdva pr\u00e1vo na prec\u00edznu genetick\u00fa diagnostiku. V tomto oh\u013eade je ve\u013emi d\u00f4le\u017eit\u00e1 st\u00e1la komunik\u00e1cia odborn\u00fdch spolo\u010dnost\u00ed s Ministerstvom zdravotn\u00edctva Slovenskej republiky a so zdravotn\u00fdmi pois\u0165ov\u0148ami. Identifikovan\u00e9 boli po\u017eiadavky najm\u00e4 na dovybavenie n\u00e1rodn\u00fdch \u0161pecializovan\u00fdch expert\u00edznych pracov\u00edsk pre ZCH v Slovenskej republike adekv\u00e1tnou technikou a kvalifikovan\u00fdm person\u00e1lom.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Zriedkav\u00e9 choroby v syst\u00e9me elektronick\u00e9ho zdravotn\u00edctva a pr\u00ednos vyu\u017e\u00edvania informa\u010dn\u00fdch technol\u00f3gi\u00ed<\/h3>\n\n\n\n<p>Vo v\u0161eobecnosti predpoklad\u00e1me intenz\u00edvny rozvoj telemedic\u00edny, vyu\u017e\u00edvanie umelej inteligencie, informa\u010dn\u00fdch technol\u00f3gi\u00ed v nadv\u00e4znosti na s\u00fa\u010dasn\u00e9 trendy aj v SR (RARE 2030). Vy\u017eiada si to adapt\u00e1ciu na tieto trendy nielen v bezprostrednom prostred\u00ed poskytovate\u013eov zdravotnej starostlivosti, ale a najm\u00e4 u regul\u00e1torov. Pre oblas\u0165 ZCH poskytuje tento trend ve\u013ek\u00e9 mo\u017enosti pr\u00ednosu a hlavne medzin\u00e1rodnej spolupr\u00e1ce. NP 2030 predpoklad\u00e1 podporu zakotvenia ZCH do v\u00fdvoja a pou\u017e\u00edvania v syst\u00e9me DRG, v prostred\u00ed elektronick\u00e9ho zdravotn\u00edctva, v NCZI, ale aj v priamom vyu\u017e\u00edvan\u00ed po\u010d\u00edta\u010dovo asistovanej klinickej a laborat\u00f3rnej diagnostiky. Vyu\u017e\u00edvanie informa\u010dn\u00fdch technol\u00f3gi\u00ed v celej \u0161\u00edrke je aj esenci\u00e1lnou s\u00fa\u010das\u0165ou zapojenia SR do Eur\u00f3pskych referen\u010dn\u00fdch sieti pre ZCH.&nbsp;&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Centraliz\u00e1cia, hierarchiz\u00e1cia starostlivosti a podpora rozvoja \u0161pecializovan\u00fdch pracov\u00edsk pre ZCH<\/h3>\n\n\n\n<p>Pre rozvoj zdravotnej starostlivosti o pacientov so ZCH m\u00e1 z poh\u013eadu efektivity d\u00f4le\u017eit\u00fa \u00falohu centraliz\u00e1cia, hierarchiz\u00e1cia a podpora n\u00e1rodn\u00fdch \u0161pecializovan\u00fdch expert\u00edznych pracov\u00edsk pre ZCH v Slovenskej republike (tzv. Centr\u00e1 expert\u00edzy pre ZCH pod\u013ea odpor\u00fa\u010dan\u00ed EUCERD -The European Commission Expert Group on Rare Diseases). Sie\u0165 n\u00e1rodn\u00fdch \u0161pecializovan\u00fdch expert\u00edznych pracov\u00edsk pre ZCH v Slovenskej republike by mala by\u0165 napojen\u00e1 na eur\u00f3psku referen\u010dn\u00fa sie\u0165 v s\u00falade so smernicou Eur\u00f3pskeho parlamentu a Rady 2011\/24\/E\u00da z 9. marca 2011 o uplat\u0148ovan\u00ed pr\u00e1v pacientov pri cezhrani\u010dnej zdravotnej starostlivosti (\u010falej len \u201eSmernica E\u00da\u201c).&nbsp; V s\u00fa\u010dasnosti m\u00e1me v SR 17 pracov\u00edsk uznan\u00fdch za Expert\u00edzne pracovisk\u00e1 pre ZCH, vyhodnoten\u00fdch v roku 2017. S\u00fa zverejnen\u00e9 na webovej str\u00e1nke MZ SR v N\u00e1rodnom zozname pre zriedkav\u00e9 choroby pod linkom:<\/p>\n\n\n\n<p><a href=\"https:\/\/www.health.gov.sk\/Clanok?narodna-strategia-zriedkave-choroby\">https:\/\/www.health.gov.sk\/Clanok?narodna-strategia-zriedkave-choroby<\/a><\/p>\n\n\n\n<p>S\u00fa to pracovisk\u00e1 s celoslovensk\u00fdm vplyvom. V s\u00fa\u010dasnosti sa 8 z nich zapojilo do ERN ako pridru\u017een\u00ed \u010dlenovia a <s>4<\/s> pracovisk\u00e1 \u010dakaj\u00fa na rozhodnutie EK o plnom \u010dlenstve v ERN. Je potrebn\u00e9 definova\u0165 postavenie pracov\u00edsk akt\u00edvnych v ERN v SR a vytvori\u0165 priestor podpory pre vyu\u017e\u00edvanie odborn\u00fdch stanov\u00edsk v r\u00e1mci medzin\u00e1rodn\u00fdch konzult\u00e1cii, ktor\u00e9 ERN zabezpe\u010duj\u00fa. V s\u00falade s eur\u00f3pskymi odpor\u00fa\u010daniami a potrebou praxe je potrebn\u00e9 vykona\u0165 na pracovisk\u00e1ch pre ZCH n\u00e1sledn\u00e9 vyhodnotenie plnenia krit\u00e9ri\u00ed, na z\u00e1klade ktor\u00fdch boli pracovisk\u00e1 zaraden\u00e9 do zoznamu pracov\u00edsk pre ZCH v SR. Z\u00e1rove\u0148 je vhodn\u00e9 vyhodnoti\u0165 aj po\u017eiadavky t\u00fdchto pracov\u00edsk na podporu ich \u010dinnosti, vytvori\u0165 syst\u00e9m podpory rozvoja expert\u00edznych pracov\u00edsk a realizova\u0165 \u010fal\u0161ie kolo prihlasovania do N\u00e1rodn\u00e9ho zoznamu pracov\u00edsk pre ZCH. Tieto pracovisk\u00e1 plnia z\u00e1kladn\u00fa \u00falohu centraliz\u00e1cie a hierarchiz\u00e1cie starostlivosti nielen v oblasti diagnostiky, ale aj v prib\u00fadaj\u00facich mo\u017enostiach lie\u010dby pacientov so ZCH. V samotnej organiz\u00e1cii starostlivosti sa mus\u00ed venova\u0165 pozornos\u0165 prechodu kvalitnej starostlivosti z detsk\u00e9ho veku do starostlivosti v dospelosti. Pri zria\u010fovan\u00ed n\u00e1rodn\u00fdch \u0161pecializovan\u00fdch expert\u00edznych pracov\u00edsk pre ZCH v Slovenskej republike boli a bud\u00fa uplat\u0148ovan\u00e9 krit\u00e9ri\u00e1 a postup (v linku pod textom) na vyhodnocovanie \u017eiadost\u00ed o zaradenie poskytovate\u013ea zdravotnej starostlivosti do N\u00e1rodn\u00e9ho zoznamu pracov\u00edsk pre zriedkav\u00e9 choroby v Slovenskej republike obsiahnut\u00e9 v Metodickom postupe Komisie Ministerstva zdravotn\u00edctva Slovenskej republiky pre zriedkav\u00e9 choroby (Rare Diseases \u2013 RD) z 18. novembra 2015 a vych\u00e1dzaj\u00face z eur\u00f3pskych kvalitat\u00edvnych krit\u00e9ri\u00ed a doteraj\u0161\u00edch dom\u00e1cich sk\u00fasenost\u00ed.&nbsp;<\/p>\n\n\n\n<p><a href=\"https:\/\/www.health.gov.sk\/Clanok?zriedkave-choroby-metodicky-postup\">https:\/\/www.health.gov.sk\/Clanok?zriedkave-choroby-metodicky-postup<\/a><\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Odborn\u00e9 usmernenia ku kvalite zdravotnej starostlivosti o pacientov so ZCH.<\/h3>\n\n\n\n<p>Pre problematiku ZCH s\u00fa ve\u013emi d\u00f4le\u017eit\u00e9 krit\u00e9ri\u00e1 kvality v poskytovan\u00ed zdravotnej starostlivosti. Je nevyhnutn\u00e9 vypracova\u0165 \u010fal\u0161ie odborn\u00e9 usmernenia pre oblas\u0165 ZCH a podporova\u0165 systematick\u00e9 vyu\u017e\u00edvanie eur\u00f3pskych odpor\u00fa\u010dan\u00ed. Vy\u017eaduje sa zapojenie do s\u00fa\u010dasn\u00fdch aktiv\u00edt MZ SR pre tvorbu a uplatnenie \u0160DTP (\u0161tandardn\u00e9 diagnostick\u00e9 a terapeutick\u00e9 postupy). Tvorba odpor\u00fa\u010dan\u00ed kvality pre zriedkav\u00e9\/ve\u013emi zriedkav\u00e9 choroby je pozna\u010den\u00e1 najm\u00e4 ich mal\u00fdm po\u010dtom a zriedkavos\u0165ou v popul\u00e1cii a enormn\u00fdm po\u010dtom typov ZCH. Preto sa nevyhneme re\u0161pektovaniu celosvetovo uzn\u00e1van\u00fdch krit\u00e9ri\u00ed spr\u00e1vnej praxe a tvorbu \u0160DTP v oblasti ZCH mus\u00edme zamera\u0165 na krit\u00e9ri\u00e1 dostupnosti diagnostiky. Tu sa evidentne uplatnia po\u017eiadavky na \u0161irokospektr\u00e1lne diagnostick\u00e9 met\u00f3dy ako s\u00fa panelov\u00e9 sekvenovanie g\u00e9nov, celoex\u00f3mov\u00e9 a celogen\u00f3mov\u00e9 sekvenovanie a \u010fal\u0161ie. Vo vyu\u017e\u00edvan\u00ed t\u00fdchto diagnostick\u00fdch pr\u00edstupov pre ZCH v\u00fdznamne zaost\u00e1vame oproti s\u00fa\u010dasn\u00e9mu uplatneniu v Eur\u00f3pe, aj ke\u010f na\u0161e \u0161pecializovan\u00e9 laborat\u00f3ri\u00e1 nemaj\u00fa s prev\u00e1dzkovan\u00edm t\u00fdchto met\u00f3d technick\u00e9 probl\u00e9my. V tomto kontexte je \u017eiad\u00faca re\u00e1lna spolupr\u00e1ca na \u00farovni zdravotn\u00fdch pois\u0165ovn\u00ed, Ministerstva zdravotn\u00edctva a odborn\u00fdch spolo\u010dnost\u00ed k zabezpe\u010deniu spr\u00e1vnej a dostupnej diagnostiky a lie\u010dby ZCH.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Financovanie zdravotnej starostlivosti o pacientov so ZCH<\/h3>\n\n\n\n<p>Najnov\u0161ie diagnostick\u00e9 laborat\u00f3rne met\u00f3dy uplat\u0148ovan\u00e9 pri ZCH a finan\u010dne n\u00e1ro\u010dn\u00e1 lie\u010dba vy\u017eaduj\u00fa st\u00e1lu komunik\u00e1ciu a spolupr\u00e1cu poskytovate\u013eov, odborn\u00fdch spolo\u010dnost\u00ed, zdravotn\u00fdch pois\u0165ovn\u00ed a Ministerstva zdravotn\u00edctva SR. Doteraz sa tento typ problematiky financovania rie\u0161il len bilater\u00e1lne, medzi poskytovate\u013emi a zdravotn\u00fdmi pois\u0165ov\u0148ami, \u010do v praxi vyvol\u00e1va zbyto\u010dn\u00e9 probl\u00e9my. V\u00fdznam komplexn\u00e9ho posudzovania financovania je pr\u00e1ve v oblasti ZCH ve\u013emi \u017eiad\u00faci. \u0160pecifick\u00e9 podmienky financovania starostlivosti o pacientov so ZCH sa odv\u00edjaj\u00fa od znenia \u00dastavy SR a pr\u00edslu\u0161n\u00fdch zdravotn\u00edckych z\u00e1konov. Uhr\u00e1dzanie podstatnej \u010dasti napr\u00edklad genetick\u00fdch, biochemicko-genetick\u00fdch, \u0161peci\u00e1lnych a \u010fal\u0161\u00edch n\u00e1ro\u010dn\u00fdch a potrebn\u00fdch v\u00fdkonov prebieha na\u010falej pod\u013ea zastaran\u00e9ho Zoznamu zdravotn\u00fdch v\u00fdkonov s bodov\u00fdmi hodnotami, ktor\u00e9 u\u017e d\u00e1vno nezodpovedaj\u00fa potreb\u00e1m praxe. Tento \u201ebodovn\u00edk\u201c re\u00e1lne neodr\u00e1\u017ea vyu\u017e\u00edvanie nov\u00fdch technol\u00f3gi\u00ed v problematike ZCH. Re\u00e1lnym v\u00fdchodiskom z danej situ\u00e1cie je zavedenie nov\u00e9ho Zoznamu zdravotn\u00fdch v\u00fdkonov do praxe. Koncepcia nov\u00e9ho Zoznamu zdravotn\u00fdch v\u00fdkonov sa nach\u00e1dza v procese.<\/p>\n\n\n\n<p><em>&nbsp;<\/em>Zlep\u0161enie sp\u00f4sobu financovania zdravotnej starostlivosti o pacientov so ZCH by sa malo dosiahnu\u0165 viacer\u00fdmi aktivitami ako napr.: plnen\u00edm \u00falohy AP \u010d. 3., \u00falohy \u010d. 3.3.2 a 3.3.3, evtl. \u010derpan\u00edm finan\u010dn\u00fdch prostriedkov z EK, \u0160vaj\u010diarskeho koh\u00e9zneho fondu, ako aj noveliz\u00e1ciou z\u00e1kona \u010d. 363\/2011 Z. z. (zmena syst\u00e9mu posudzovania n\u00e1kladovej efekt\u00edvnosti liekov, zmena syst\u00e9mu poradn\u00fdch org\u00e1nov konaj\u00facich vo veciach kategoriz\u00e1cie s cie\u013eom zabezpe\u010di\u0165 transparentnos\u0165 a efektivitu v rozhodovac\u00edch procesoch a zlep\u0161i\u0165 podmienky pre vstup preuk\u00e1zate\u013ene \u00fa\u010dinn\u00fdch inovat\u00edvnych liekov na n\u00e1\u0161 trh, zmeny syst\u00e9mu osobitn\u00e9ho sp\u00f4sobu \u00fahrady liekov (tzv. schva\u013eovanie v\u00fdnimiek) s cie\u013eom zadefinova\u0165 jasn\u00e9, jednotn\u00e9, \u010dasovo limitovan\u00e9 a transparentn\u00e9 krit\u00e9ria na schv\u00e1lenie lie\u010dby na v\u00fdnimku\u201c s\u00fa predmetom pl\u00e1nu legislat\u00edvnych \u00faloh vl\u00e1dy SR na rok 2021 \u2013 gestorom je MZ SR).<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Problematika liekov pre zriedkav\u00e9 choroby<\/h3>\n\n\n\n<p>Len pribli\u017ene 5% zriedkav\u00fdch chor\u00f4b je lie\u010dite\u013en\u00fdch. 80% ZCH je genetick\u00e9ho p\u00f4vodu, odvr\u00e1tite\u013en\u00e1 prevencia spo\u010d\u00edva v dostupnosti a r\u00fdchlosti molekul\u00e1rno-genetick\u00fdch vy\u0161etren\u00ed rizikov\u00fdch rod\u00edn resp. v podpore spolupr\u00e1ce medzi gynekol\u00f3gmi, p\u00f4rodn\u00edkmi a klinick\u00fdmi genetikmi resp. zabezpe\u010den\u00ed molekul\u00e1rno-genetick\u00fdch vy\u0161etren\u00ed.<\/p>\n\n\n\n<p>N\u00e1rodn\u00fd program je strategick\u00fdm dokumentom, ktor\u00fd komplexne rie\u0161i starostlivos\u0165 o pacientov so zriedkav\u00fdmi chorobami. Lie\u010dba je bezpodmiene\u010dne d\u00f4le\u017eitou s\u00fa\u010das\u0165ou zdravotnej starostlivosti. Je potrebn\u00e9 komplexne rie\u0161i\u0165 vstup inovat\u00edvnych liekov na slovensk\u00fd liekov\u00fd trh, tak aby pacienti mali pr\u00edstup k najmodernej\u0161ej lie\u010dbe. V r\u00e1mci tejto problematiky je d\u00f4le\u017eit\u00e9 aby sa venovala pozornos\u0165 aj liekom na zriedkav\u00e9 choroby.<\/p>\n\n\n\n<p>S\u00fa\u010dasn\u00e9 financovanie liekov v SR nezoh\u013ead\u0148uje trendy v Eur\u00f3pe v oblasti OMP (orphan medicinal products) ako aj inovat\u00edvnej lie\u010dby &#8211; bunkov\u00e9 a molekul\u00e1rne biotechnol\u00f3gie, g\u00e9nov\u00e9 terapie, somatick\u00e9 bunkov\u00e9 terapie a tkanivov\u00e9 in\u017einierstvo (NARIADENIE EUR\u00d3PSKEHO PARLAMENTU A RADY (ES) \u010d. 1394\/2007 z 13. novembra 2007 o liekoch na inovat\u00edvnu lie\u010dbu, ktor\u00fdm sa men\u00ed a dop\u013a\u0148a smernica 2001\/83\/ES a nariadenie (ES) \u010d. 726\/2004). Je d\u00f4le\u017eit\u00e9 implementova\u0165 syst\u00e9m tzv. horizon scanning a pripravova\u0165 syst\u00e9m na vstup nov\u00fdch liekov a to nielen finan\u010dne, ale aj legislat\u00edvne. Dostupnos\u0165 nov\u00fdch orphan liekov by mohla by\u0165 lep\u0161ie pripraven\u00e1, ak by sa pr\u00edchod t\u00fdchto liekov systematicky monitoroval najm\u00e4 v spolupr\u00e1ci so \u0160\u00daKL. Pracovn\u00edci \u0160\u00daKL priamo spolupracuj\u00fa s Eur\u00f3pskou liekovou agent\u00farou. Nedostatok sk\u00fasenost\u00ed s personalizovanou\/inovat\u00edvnou medic\u00ednou v bud\u00facnosti negat\u00edvne ovplyvn\u00ed nielen n\u00e1klady na lie\u010dbu a starostlivos\u0165, ale aj celkov\u00fa \u00farove\u0148 poskytovanej zdravotnej starostlivosti na Slovensku nez\u00e1visle od prevalencie a z\u00e1va\u017enosti diagn\u00f3zy ako aj ich mortalitu a n\u00edzku kvalitu \u017eivota popul\u00e1cie Slovenska.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Zv\u00fd\u0161enie dostupnosti liekov pre zriedkav\u00e9 choroby pre pacientov.<\/h3>\n\n\n\n<p>Aktu\u00e1lny stav dostupnosti lie\u010dby OMP je nevyhovuj\u00faci. V SR bolo na konci roka 2019 kategorizovan\u00fdch &#8211; priamo dostupn\u00fdch 29 zo 165 liekov so \u0161tat\u00fatom OMP v E\u00da. Na Slovensk\u00fd trh prich\u00e1dzaj\u00fa OMP o nieko\u013eko rokov nesk\u00f4r a tento trend sa zhor\u0161uje. K\u00fdm do roka 2011 bolo ome\u0161kanie vstupu OMP na slovensk\u00fd trh 3,3 roka, v obdob\u00ed 2018 -2019, to bolo 4,19 roka. Rie\u0161en\u00edm je definovanie podmienok vstupu OMP tak, aby zoh\u013ead\u0148ovali ich \u0161pecifik\u00e1. D\u00f4le\u017eit\u00e1 je tie\u017e rev\u00edzia potreby a rozsahu administrat\u00edvnych postupov pre lie\u010dbu OMP v spolupr\u00e1ci s odborn\u00fdmi spolo\u010dnos\u0165ami resp. expert\u00edznymi pracoviskami.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Podpora skor\u00e9ho pr\u00edstupu k lie\u010dbe \u2013 Early access program<\/h3>\n\n\n\n<p>Napriek silnej nenaplnenej medic\u00ednskej potrebe sa pod\u013ea aktu\u00e1lne platnej legislat\u00edvy slovensk\u00ed pacienti nemaj\u00fa mo\u017enos\u0165 dosta\u0165 k experiment\u00e1lnej lie\u010dbe. Skor\u00fd pr\u00edstup k lie\u010dbe je benefitom nielen pre pacientov, ale aj lek\u00e1rov, regul\u00e1torov, platcov a v\u00fdrobcov. Rie\u0161i probl\u00e9m nenaplnenej medic\u00ednskej potreby, \u010diasto\u010dne kompenzuje absenciu klinick\u00fdch \u0161t\u00fadi\u00ed, podporuje z\u00edskavanie vlastn\u00fdch klinick\u00fdch sk\u00fasenost\u00ed a v neposlednom rade poskytuje modern\u00fa terapiu bez potreby financovania z verejn\u00fdch zdrojov.<\/p>\n\n\n\n<p>V tejto s\u00favislosti je potrebn\u00e9 vybudovanie syst\u00e9mu pre zabezpe\u010denia dostupnosti a hodnotenia indik\u00e1ci\u00ed off label lie\u010dby na z\u00e1klade odborn\u00fdch krit\u00e9ri\u00ed, a to najm\u00e4 v pr\u00edpadoch kde je vysok\u00e1 nenaplnen\u00e1 medic\u00ednska potreba.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Smernica E\u00da o cezhrani\u010dnej starostlivosti a jej dopad na oblas\u0165 ZCH, diagnostiku a lie\u010dbu pacientov so ZCH<\/h3>\n\n\n\n<h3 class=\"wp-block-heading\">&nbsp;<\/h3>\n\n\n\n<p>Uplatnenie smernice Eur\u00f3pskeho parlamentu a Rady 2011\/24\/E\u00da z 9. marca 2011 o uplat\u0148ovan\u00ed pr\u00e1v pacientov pri cezhrani\u010dnej zdravotnej starostlivosti m\u00e1 za \u00falohu odstr\u00e1ni\u0165 bari\u00e9ry v dostupnosti diagnostiky a lie\u010dby pacientov so ZCH. Implement\u00e1cia smernice E\u00da do slovenskej legislat\u00edvy a jej praktick\u00e9 vyu\u017e\u00edvanie umo\u017e\u0148uje diagnostiku a lie\u010dbu \u0161irokej palety ZCH, ktor\u00e1 sa poskytuje v \u0161pecializovan\u00fdch pracovisk\u00e1ch v E\u00da.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 4<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Skr\u00edning a prevencia ZCH:<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\">Skr\u00edningov\u00e9 centrum novorodencov v Slovenskej republike<\/h3>\n\n\n\n<p>Skr\u00edningov\u00e9 centrum novorodencov v Slovenskej republike dosiahlo kvalitat\u00edvnu \u00farove\u0148 a efektivitu, ktor\u00e9 s\u00fa porovnate\u013en\u00e9 s najrozvinutej\u0161\u00edmi krajinami. Pravidelne dop\u013a\u0148a zoznam skr\u00ednovan\u00fdch chor\u00f4b v s\u00falade s nov\u00fdmi vedeck\u00fdmi poznatkami, spolupracuje na medzin\u00e1rodnej \u00farovni a je prvotn\u00fdm zdrojom diagnostiky niektor\u00fdch z\u00e1va\u017en\u00fdch chor\u00f4b u det\u00ed. V roku 2021 pripravuje Skr\u00edningov\u00e9 centrum novorodencov SR pilotn\u00fa \u0161t\u00fadiu skr\u00edningu imunodeficiencie (SCID) a spin\u00e1lnej muskul\u00e1rnej atrofie (SMA). \u010eal\u0161\u00edm pripravovan\u00fdm testom je skor\u00e1 detekcia fet\u00e1lneho alkoholov\u00e9ho syndr\u00f3mu stanoven\u00edm fosfatidyletanolu v suchej kvapke krvi. Pripravuje sa tie\u017e \u0161t\u00fadia mo\u017enosti detekcie galaktoz\u00e9mie.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>&nbsp;<\/strong>\u010eal\u0161ie v\u00fdvojov\u00e9 chyby a choroby skr\u00ednovan\u00e9 u novorodencov<\/h3>\n\n\n\n<p>V Slovenskej republike je rozvinut\u00fd novorodeneck\u00fd skr\u00edning por\u00fach sluchu, bedrov\u00fdch k\u013abov, v\u00fdvojov\u00fdch ch\u00fdb CNS, obli\u010diek a srdca. V rozvoji tejto oblasti skr\u00edningu a n\u00e1slednej zdravotnej starostlivosti je st\u00e1ly pozit\u00edvny v\u00fdvoj v s\u00falade s nov\u00fdmi vedeck\u00fdmi poznatkami.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Selekt\u00edvny skr\u00edning dedi\u010dn\u00fdch metabolick\u00fdch por\u00fach<\/h3>\n\n\n\n<p>Roz\u0161\u00edrenie a skvalitnenie selekt\u00edvneho skr\u00edningu dedi\u010dn\u00fdch metabolick\u00fdch por\u00fach je jednou z prioritn\u00fdch aktiv\u00edt n\u00e1rodn\u00e9ho programu. Skr\u00edning novorodencov sa s nov\u00fdmi poznatkami roz\u0161iruje, ale n\u00e1sledn\u00e9 dodiagnostikovanie a n\u00e1sledn\u00e1 zdravotn\u00e1 starostlivos\u0165 vy\u017eaduje rie\u0161enie roz\u0161irovania kapac\u00edt pre nov\u00fa diagnostiku ako aj po\u017eiadavky na pr\u00edstrojov\u00e9 zabezpe\u010denie. K tomu prib\u00fadaj\u00fa \u010fal\u0161ie po\u017eiadavky na kvalitn\u00fd selekt\u00edvny skr\u00edning DMP z oblasti: pediatrie, neurol\u00f3gie, klinickej genetiky a \u010fal\u0161\u00edch medic\u00ednskych odborov. Z\u00e1rove\u0148 je t\u00e1to oblas\u0165 \u00fazko prepojen\u00e1 na indik\u00e1cie laborat\u00f3rneho testovania. Z medic\u00ednskeho h\u013eadiska sa komplex diagnostiky rozv\u00edja extr\u00e9mne r\u00fdchlo a treba tomu venova\u0165 n\u00e1le\u017eit\u00e9 kapacity. V\u00fdznamn\u00e9 sa v tomto kontexte javia po\u017eiadavky na financovanie organiz\u00e1cie cel\u00e9ho syst\u00e9mu zdravotnej starostlivosti nadv\u00e4zuj\u00facej na novorodeneck\u00fd skr\u00edning v Slovenskej republike (\u0161pecializovan\u00e9 pracovisk\u00e1 klinickej a laborat\u00f3rnej diagnostiky ZCH + pediatria + Centr\u00e1 diagnostiky dedi\u010dn\u00fdch metabolick\u00fdch por\u00fach + laborat\u00f3ri\u00e1 klinickej genetiky). Intenz\u00edvnej\u0161ie sa bude prejavova\u0165 aj kumulat\u00edvny efekt, dobre zn\u00e1my vo v\u0161etk\u00fdch v\u00e4\u010d\u0161\u00edch metabolick\u00fdch centr\u00e1ch. Prib\u00fadaj\u00fa novodiagnostikovan\u00ed pacienti, ktor\u00ed s\u00fa na celo\u017eivotnej \u0161pecifickej lie\u010dbe a ktor\u00fdch je nutn\u00e9 pravidelne biochemicky monitorova\u0165. Kapacita pre selekt\u00edvny skr\u00edning sa t\u00fdm de facto m\u00f4\u017ee zni\u017eova\u0165, ak sa neprist\u00fapi k postupn\u00e9mu roz\u0161irovaniu pr\u00edstrojov\u00fdch\/person\u00e1lnych kapac\u00edt \u0161pecializovan\u00fdch pracov\u00edsk.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Starostlivos\u0165 o pacientov so zriedkav\u00fdmi chorobami v dospelom veku.<\/h3>\n\n\n\n<p>Mnoh\u00ed detsk\u00ed pacienti so ZCH sa v\u010faka dne\u0161n\u00fdm terapeutick\u00fdm mo\u017enostiam do\u017e\u00edvaj\u00fa dospel\u00e9ho veku. Exponenci\u00e1lny n\u00e1rast poznatkov a zdokona\u013eovanie diagnostick\u00fdch met\u00f3d st\u00e1le \u010dastej\u0161ie odha\u013euj\u00fa mierne (late onset) formy ochoren\u00ed, napr\u00edklad dedi\u010dn\u00fdch metabolick\u00fdch chor\u00f4b, u dospel\u00fdch pacientov. Doteraz pokr\u00fdvali pediatrick\u00e9 pracovisk\u00e1 starostlivos\u0165 o t\u00fdchto pacientov aj v dospelom veku, bude v\u0161ak nutn\u00e9 starostlivos\u0165 o dospel\u00fdch pacientov so ZCH vyrie\u0161i\u0165.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 5<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Podpora vedy a v\u00fdskumu v oblasti ZCH.<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\">V\u00fdskum podporovan\u00fd rezortom Ministerstva zdravotn\u00edctva SR &nbsp;<\/h3>\n\n\n\n<p>V\u00fdskumn\u00e9 projekty podporovan\u00e9 Ministerstvom zdravotn\u00edctva s\u00fa tradi\u010dne orientovan\u00e9 na aplikovan\u00fd v\u00fdskum. Do podporovan\u00fdch oblast\u00ed by bolo \u017eiad\u00face zaradi\u0165 aj projekty z oblasti ZCH rie\u0161en\u00e9 najm\u00e4 expert\u00edznymi pracoviskami a to aj na podklade s\u00fa\u010dasn\u00fdch pr\u00eds\u013eubov pr\u00edlevu zna\u010dn\u00fdch financi\u00ed pre zdravotn\u00edctvo .&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">V\u00fdskum podporovan\u00fd organiz\u00e1ciami mimo Ministerstvo zdravotn\u00edctva SR &nbsp;<\/h3>\n\n\n\n<p>Tematika v\u00fdskumu ZCH sa aj u organiz\u00e1ci\u00ed mimo rezortu MZ SR objavuje sporadicky. NP m\u00e1 h\u013eada\u0165 zapojenie zdravotn\u00edckych organiz\u00e1ci\u00ed aj do v\u00fdskumu organizovan\u00e9ho pracoviskami mimo rezort MZ SR. Spolupr\u00e1ca s in\u0161tit\u00faciami biomedic\u00ednskeho v\u00fdskumu znamen\u00e1 nie len transfer poznatkov medzi v\u00fdskumom a klinickou praxou, ale aj vytvorenie podmienok pre dorie\u0161enie mnoh\u00fdch diagnostick\u00fdch ot\u00e1zok napr\u00edklad monitorovanie markerov vybran\u00fdch DMP.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Medzin\u00e1rodn\u00e1 spolupr\u00e1ca vo v\u00fdskume<\/h3>\n\n\n\n<p>V\u00fdskumu ZCH na r\u00f4znych \u00farovniach sa venuje v Eur\u00f3pe viacero v\u00fdznamn\u00fdch organiz\u00e1ci\u00ed. Slovensko je do t\u00fdchto aktiv\u00edt zaraden\u00e9 minim\u00e1lne. Je to v d\u00f4sledku ve\u013emi limitovanej vedeckej z\u00e1kladne a vedeckej komunity v oblasti ZCH v SR. Mo\u017enosti zapojenia s\u00fa omnoho v\u00e4\u010d\u0161ie ako je na\u0161a re\u00e1lna \u00fa\u010das\u0165. Bolo by \u017eiaduce vyvin\u00fa\u0165 podstatne v\u00e4\u010d\u0161iu a nebyrokratick\u00fa podporu v\u00fdskumu ZCH v SR. Zapojenie MZ SR do pr\u00edprav EU Partnership on Rare Diseases ako bud\u00faceho riadneho partnera projektu by umo\u017enilo komplexnej\u0161ie zapojenie Slovenska do tejto k\u013e\u00fa\u010dovej iniciat\u00edvy. Tento projekt bude pokra\u010dovan\u00edm s\u00fa\u010dasn\u00e9ho projektu <a href=\"https:\/\/www.ejprarediseases.org\/\">European Joint Program on Rare Diseases<\/a><a href=\"https:\/\/www.ejprarediseases.org\/\"> <\/a>(EJP RD), ktor\u00fd kon\u010d\u00ed v roku 2023, pri\u010dom pr\u00edpravy nov\u00e9ho projektu za\u010dn\u00fa u\u017e v roku 2021.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 6<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Zber \u00fadajov o pacientoch so ZCH , \u0161pecializovan\u00e9 registre a vytvorenie \u201cVirtu\u00e1lneho registra ZCH\u201c:<\/h2>\n\n\n\n<p>Pod\u013ea recentnej epidemiologickej anal\u00fdzy v\u00fdskytu ZCH, publikovanej Wakap et al.2019, je popula\u010dn\u00e1 prevalencia pacientov so ZCH minim\u00e1lne na \u00farovni 3,5% popul\u00e1cie , \u010do pre Slovensko znamen\u00e1 v\u00fdskyt pribli\u017ene u 200 000 obyvate\u013eov. V zozname n\u00e1rodn\u00fdch zdravotn\u00fdch registrov (NZR) boli do roku 2014 legislat\u00edvne uprednostnen\u00e9 iba hromadne sa vyskytuj\u00face z\u00e1va\u017en\u00e9 skupiny chor\u00f4b. Od roku 2014 sa pozornos\u0165 upriamila aj na ZCH a v s\u00fa\u010dasnosti m\u00e1me 3 tak\u00e9to registre. Ide o a.\/hl\u00e1senia monog\u00e9nov\u00fdch chor\u00f4b, chromoz\u00f3mov\u00fdch anom\u00e1li\u00ed a genetick\u00fdch syndr\u00f3mov od klinick\u00fdch genetikov; b.\/o skupiny ZCH, ktor\u00e9 maj\u00fa hl\u00e1si\u0165 expert\u00edzne pracovisk\u00e1 pre ZCH; a c.\/o hl\u00e1senia pacientov s neuromuskul\u00e1rnymi chorobami. Pacienti so ZCH m\u00f4\u017eu by\u0165 identifikovan\u00ed aj v in\u00fdch registroch NCZI. Na podklade zdravotn\u00fdch \u00fadajov r\u00f4znych doteraj\u0161\u00edch hl\u00e1sen\u00ed do NCZI v\u0161ak nie je v\u0161ak mo\u017en\u00e9 vygenerova\u0165 po\u010dty pacientov so zriedkav\u00fdmi chorobami ako celok. Je to d\u00f4sledok doteraj\u0161ej limit\u00e1cie ZCH v Medzin\u00e1rodnej klasifik\u00e1cii zriedkav\u00fdch chor\u00f4b. V MKCH 10 je toti\u017e z po\u010dtu 6171 typov ZCH (ORPHANET) uveden\u00e9 len cca 400 typov ZCH. Pre ZCH s\u00fa v s\u00fa\u010dasnosti&nbsp; podstatn\u00e9 klasifik\u00e1cie na z\u00e1klade k\u00f3dovania ORPHANETU a pre monog\u00e9nov\u00e9 genetick\u00e9 choroby je to aj k\u00f3dovanie pod\u013ea OMIM. Uvedenie MKCH 11 chor\u00f4b podstatne zlep\u0161\u00ed mo\u017enosti identifik\u00e1cie ZCH v zdravotn\u00edckej \u0161tatistike, nako\u013eko sa v tejto klasifik\u00e1cii eviduje cca 5400 k\u00f3dov pre diagn\u00f3zy ZCH. M\u00e1me z\u00e1ujem spolupracova\u0165 s European Platform on Rare Diseases Registration. Do Registra ZCH SR, ktor\u00fd sa nap\u013a\u0148a od 1.1.2014 aj za pomoci aktiv\u00edt uveden\u00fdch v Ak\u010dn\u00fdch pl\u00e1noch k NP, bolo doteraz nahl\u00e1sen\u00fdch viac ako 10 000 prec\u00edzne klinicky a najm\u00e4 laborat\u00f3rne diagnostikovan\u00fdch kazuist\u00edk ZCH. Vyu\u017eitie hl\u00e1sen\u00ed zo v\u0161etk\u00fdch registrov s v\u00fdskytom ZCH na b\u00e1ze minim\u00e1lnych epidemiologicky zhodnotite\u013en\u00fdch \u00fadajov so snahou o \u010do najmen\u0161iu administrat\u00edvnu z\u00e1\u0165a\u017e pracovn\u00edkov do tzv.\u201e Virtu\u00e1lneho registra ZCH\u201c je \u010fal\u0161\u00edm mo\u017en\u00fdm krokom k z\u00edskaniu relevantn\u00fdch \u00fadajov o v\u00fdskyte ZCH v slovenskej popul\u00e1cii. \u00dadaje z tohto registra maj\u00fa nezastupite\u013en\u00fa \u00falohu v pl\u00e1novan\u00ed rozvoja zdravotnej starostlivosti, v pl\u00e1novan\u00ed n\u00e1kladov na zdravotn\u00fa starostlivos\u0165, vo v\u00fdskume, v \u00fa\u010dasti na v\u00fdvoji liekov pre ZCH (OMP), a \u010fal\u0161\u00edch aktivit\u00e1ch, (eduk\u00e1cia, soci\u00e1lne za\u010dlenenie, at\u010f.). Zvl\u00e1dnutie tejto \u00falohy softv\u00e9rov\u00fdmi prostriedkami a vyu\u017eit\u00edm informa\u010dn\u00fdch technol\u00f3gi\u00ed je v\u00fdzvou pre elektronick\u00e9 zdravotn\u00edctvo.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 7<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Starostlivos\u0165 o kvalitu \u017eivota a soci\u00e1lne za\u010dlenenie pacientov so ZCH (podpora a posilnenie pacientskych organiz\u00e1ci\u00ed pre ZCH v Slovenskej republike):<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\">Podpora \u00fasilia pacientskych organiz\u00e1ci\u00ed v oblasti ZCH<\/h3>\n\n\n\n<p>Pacientske organiz\u00e1cie podporuj\u00face rozvoj starostlivosti o pacientov so ZCH s\u00fa v Eur\u00f3pe ve\u013emi v\u00fdznamn\u00e9 a vplyvn\u00e9, zdru\u017een\u00e9 v EURORDIS. Aj pre SR je ve\u013emi pr\u00ednosn\u00e9 podporova\u0165 praktick\u00fa \u010dinnos\u0165 pacientskych organiz\u00e1ci\u00ed pre ZCH zdru\u017een\u00fdch v SAZCH (Slovensk\u00e1 aliancia zriedkav\u00fdch chor\u00f4b). SAZCH je \u00faspe\u0161ne etablovan\u00e1 v EURORDIS. Z\u00e1stupca SAZCH je \u010dlenom komisie MZ SR pre ZCH a prostredn\u00edctvom tohto \u010dlena sa m\u00f4\u017ee dom\u00e1ca problematika pacientov so ZCH, ako aj medzin\u00e1rodne konzultovan\u00e1 \u010dinnos\u0165 v tejto oblasti, dost\u00e1va\u0165 na p\u00f4du MZ SR. Osobitne je d\u00f4le\u017eit\u00e9 n\u00e1js\u0165 v r\u00e1mci grantov\u00fdch projektov finan\u010dn\u00e9 zdroje na podporu spolupr\u00e1ce so SAZCH, resp. jednotliv\u00fdch pacientskych organiz\u00e1ci\u00ed spolupr\u00e1ce s odborn\u00fdmi spolo\u010dnos\u0165ami, \u0161pecializovan\u00fdmi a expert\u00edznymi pracoviskami pre ZCH. SAZCH a Komisia MZ SR musia venova\u0165 v\u00e4\u010d\u0161iu pozornos\u0165 soci\u00e1lnym ot\u00e1zkam.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 8<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Medzirezortn\u00e1 spolupr\u00e1ca v problematike ZCH a komisia MZ SR pre ZCH:<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\">\u00dalohy rezortnej komisie<\/h3>\n\n\n\n<p>Hlavn\u00e9 \u00falohy komisie MZ SR pre ZCH s\u00fa vymedzen\u00e9 \u0161tat\u00fatom. Komisia sa okrem in\u00e9ho z\u00fa\u010dast\u0148uje vypracovania N\u00e1rodn\u00e9ho programu a Ak\u010dn\u00fdch programov MZ SR na podporu plnenia \u00faloh v oblasti ZCH. V medziach \u0161tat\u00fatu napom\u00e1ha realiz\u00e1cii a vyhodnocovaniu prijat\u00fdch \u00faloh. Sleduje v\u00fdvoj problematiky v E\u00da a navrhuje pou\u017eitie nov\u00fdch medzin\u00e1rodn\u00fdch odpor\u00fa\u010dan\u00ed do praxe v SR.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Medzirezortn\u00e1 spolupr\u00e1ca v problematike ZCH<\/h3>\n\n\n\n<p>Problematika ZCH sa najviac dot\u00fdka rezortu zdravotn\u00edctva. Je v\u0161ak omnoho \u0161ir\u0161ia, preto sa od Ministerstva pr\u00e1ce, soci\u00e1lnych vec\u00ed a rodiny Slovenskej republiky a Ministerstva \u0161kolstva, vedy, v\u00fdskumu a \u0161portu Slovenskej republiky o\u010dak\u00e1va particip\u00e1cia na praktickej realiz\u00e1cii n\u00e1rodn\u00e9ho programu. Medzirezortn\u00fa spolupr\u00e1cu a informovanos\u0165 by mohlo podstatne podpori\u0165 vytvorenie spolo\u010dnej komunika\u010dnej platformy. Jej \u00falohou by bolo multidisciplin\u00e1rne zalo\u017eenie, pr\u00edstup k inform\u00e1ci\u00e1m pre v\u0161etk\u00fdch v\u00fdznamn\u00fdch akt\u00e9rov v oblasti ZCH, podpora vypracov\u00e1vania projektov a pod.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Priorita \u010d. 9<\/h2>\n\n\n\n<h2 class=\"wp-block-heading\">Zahrani\u010dn\u00e1 spolupr\u00e1ca v oblasti ZCH:<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\">Implement\u00e1cia smernice EP a Rady 2011\/24\/E\u00da z 9. marca 2011<\/h3>\n\n\n\n<p>Podstatn\u00e9 roz\u0161\u00edrenie a zjednodu\u0161enie praktick\u00e9ho vyu\u017eitia medzin\u00e1rodnej spolupr\u00e1ce v poskytovan\u00ed zdravotnej starostlivosti v\u0161eobecne a osobitne aj v oblasti zriedkav\u00fdch chor\u00f4b poskytuje smernica Eur\u00f3pskeho parlamentu a Rady 2011\/24\/E\u00da z 9. marca 2011 o uplat\u0148ovan\u00ed pr\u00e1v pacientov pri cezhrani\u010dnej zdravotnej starostlivosti. Je potrebn\u00e9 optimalizova\u0165 nastavenia a mechanizmy vyu\u017eitia Eur\u00f3pskej smernice tak, aby k nej mali pacienti priamy pr\u00edstup. V krajine s relat\u00edvne malou popul\u00e1ciou to m\u00f4\u017ee ma\u0165 ve\u013ek\u00fd dopad na mo\u017enosti poskytovania zdravotnej starostlivosti. Ak\u00e9 s\u00fa praktick\u00e9 v\u00fdsledky jej uplat\u0148ovania, bude predmetom pravideln\u00e9ho vyhodnotenia.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Realiz\u00e1cia eur\u00f3pskych odpor\u00fa\u010dan\u00ed<\/h3>\n\n\n\n<p>Zahrani\u010dn\u00e1 spolupr\u00e1ca v problematike ZCH je obzvl\u00e1\u0161\u0165 nevyhnutn\u00e1 pre mal\u00e9 \u010dlensk\u00e9 \u0161t\u00e1ty E\u00da, medzi ktor\u00e9 patr\u00ed aj Slovensk\u00e1 republika. Realizovan\u00e1 je pravideln\u00fdm zdie\u013ean\u00edm sk\u00fasenost\u00ed, v\u00fdmenou inform\u00e1ci\u00ed a nap\u013a\u0148an\u00edm odpor\u00fa\u010dan\u00fdch postupov.<\/p>\n\n\n\n<p>Pracovn\u00e9 komisie EK, EUCERD a n\u00e1sledne CEGRD (Commission Expert Group on Rare<\/p>\n\n\n\n<p>Diseases) vypracovali odpor\u00fa\u010dania pre tri k\u013e\u00fa\u010dov\u00e9 aktivity rozvoja starostlivosti o pacientov so ZCH: 1. krit\u00e9ri\u00e1 kvality pre Centr\u00e1 expert\u00edzy ZCH (v SR naz\u00fdvan\u00e9 \u0161pecializovan\u00e9 ev. expert\u00edzne pracovisk\u00e1 pre ZCH), 2. odpor\u00fa\u010dania pre Eur\u00f3pske referen\u010dn\u00e9 siete a 3. odpor\u00fa\u010dania pre registre ZCH. O\u010dak\u00e1vaj\u00fa sa v\u00fdstupy z prebiehaj\u00facej aktivity RARE 2030 (2019-2020-2021), venovanej diskusi\u00e1m o predpokladanom v\u00fdvoji poznatkov vedy a polit\u00edk v oblasti ZCH, ktor\u00e9 sa bud\u00fa postupne zapracov\u00e1va\u0165 do NP.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">European Reference Networks (ERN)<\/h3>\n\n\n\n<p>Nosite\u013emi rozvoja praktickej medzin\u00e1rodnej spolupr\u00e1ce na \u00farovni niektor\u00fdch \u0161pecializ\u00e1ci\u00ed sa od roku 2017 stalo 24 odborn\u00fdch skup\u00edn pre najd\u00f4le\u017eitej\u0161ie ZCH, ktor\u00e9 boli uznan\u00e9 za ERN Eur\u00f3pskou komisiou. ERN s\u00fa pokladan\u00e9 za podstatn\u00fd krok na zlep\u0161enie kvality poskytovanej starostlivosti pacientom so ZCH. SR m\u00e1 st\u00e1le zast\u00fapenie v riadiacom v\u00fdbore \u010dlensk\u00fdch \u0161t\u00e1tov pre ERN. Aktu\u00e1lne je do ERN zapojen\u00fdch 10 pracov\u00edsk zo SR a z toho 6 pracov\u00edsk \u010dak\u00e1 na v\u00fdsledok hodnotiaceho procesu \u017eiadosti o vstup do ERN na post pln\u00e9ho \u010dlena. Particip\u00e1cia slovensk\u00fdch pracov\u00edsk v ERN kladie ve\u013ek\u00fd d\u00f4raz na rozvoj elektronick\u00e9ho zdravotn\u00edctva. V r\u00e1mci implement\u00e1cie Eur\u00f3pskych referen\u010dn\u00fdch siet\u00ed do syst\u00e9mu by bolo ve\u013ek\u00fdm pr\u00ednosom zriadenie koordina\u010dn\u00e9ho centra pre ZCH spolu s Slovenskou alianciou pre ZCH. Koordin\u00e1cia akt\u00e9rov z r\u00f4znych prostred\u00ed by tak napomohla efekt\u00edvnej\u0161iemu a r\u00fdchlej\u0161iemu napredovaniu v tejto problematike. N\u00e1rodn\u00e9 koordina\u010dn\u00e9 centrum bolo eur\u00f3pskou prioritou uplynul\u00e9ho obdobia a tak existuje v mnoh\u00fdch \u0161t\u00e1toch Eur\u00f3pskej \u00fanie.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Medzin\u00e1rodn\u00e1 spolupr\u00e1ca pacientskych organiz\u00e1ci\u00ed<\/h3>\n\n\n\n<p>Medzin\u00e1rodn\u00e1 spolupr\u00e1ca s pacientskymi organiz\u00e1ciami je v Eur\u00f3pe zastre\u0161en\u00e1 najm\u00e4 organiz\u00e1ciou EURORDIS, ktorej akt\u00edvnym \u010dlenom je Slovensk\u00e1 aliancia zriedkav\u00fdch chor\u00f4b ako aj viacer\u00ed jej \u010dlenovia samostatne. SAZCH v s\u00fa\u010dasnosti zdru\u017euje 23 \u010dlensk\u00fdch organiz\u00e1ci\u00ed zo SR a akt\u00edvne reprezentuje problematiku ZCH na v\u0161etk\u00fdch relevantn\u00fdch f\u00f3rach. SAZCH je jedin\u00fdm akt\u00e9rom, ktor\u00e9mu sa podarilo v minulosti akt\u00edvne \u010derpa\u0165 financie z EK ur\u010den\u00e9 na problematiku zriedkav\u00fdch chor\u00f4b. Akt\u00edvne participovala v projekte EUROPLAN a pripravila viacero medzin\u00e1rodn\u00fdch workshopov pre odborn\u00edkov aj pacientov.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Zapojenie Slovenskej republiky do medzin\u00e1rodn\u00fdch projektov a programov<\/h3>\n\n\n\n<p>Nap\u013a\u0148anie aktiv\u00edt vy\u017eaduje podporova\u0165 aj z\u00e1ujem slovensk\u00fdch pracov\u00edsk na zapojenie do medzin\u00e1rodn\u00fdch v\u00fdskumn\u00fdch a organiza\u010dn\u00fdch programov a projektov v oblasti ZCH (napr\u00edklad: ERN, EUROCAT, ICBDSR, EuroGentest, Orphanet, ESHG, ESHRE, ICBDSR, EPRD<\/p>\n\n\n\n<p>Registration, Projekt IRDiRC a pod). Zapojenie Slovenskej republiky do zahrani\u010dn\u00fdch programov umo\u017e\u0148uje prenos inform\u00e1ci\u00ed, vedomost\u00ed a priamu \u00fa\u010das\u0165 v spolupr\u00e1ci.<\/p>\n\n\n\n<p><strong>Pou\u017eit\u00e1 literat\u00fara a zdroje&nbsp;<\/strong><\/p>\n\n\n\n<ol class=\"wp-block-list\" type=\"1\"><li>\u00dastava SR, aktualizovan\u00e9 znenie, \u010dasti: Druh\u00e1 hlava \u2013Prv\u00fd oddiel \u010dl.12 (1),(2),(4), \u010cl.15<\/li><\/ol>\n\n\n\n<p>(1),(2),(4), \u010cl.16 (1), \u010cl.19 (1),(2),(3), \u010cl.40, \u010cl.41 (3)<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Zdravotn\u00edcke z\u00e1kony (2006)&nbsp;<\/li><li>St\u00e9phanie Nguengang Wakap, Deborah M. Lambert, Annie Olry, Charlotte Rodwell1 Charlotte Gueydan, Val\u00e9rie Lanneau, Daniel Murphy, Yann Le Cam<sup>, <\/sup>, Ana Rath: Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database 13 April 2019 \/ Revised: 21 August 2019 \/ Accepted: 29 August 2019<\/li><li>RARE 2030 Foresight in Rare Disease Policy <a href=\"https:\/\/www.rare2030.eu\/\">https:\/\/www.rare2030.eu\/<\/a><a href=\"https:\/\/www.rare2030.eu\/\"> <\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">https:\/\/ern<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">&#8211;<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">ithaca.eu\/recommendations<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">&#8211;<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">from<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">&#8211;<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">the<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">&#8211;<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">rare<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">&#8211;<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">2030<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">&#8211;<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">foresight<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">&#8211;<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\">study\/<\/a><a href=\"https:\/\/ern-ithaca.eu\/recommendations-from-the-rare-2030-foresight-study\/\"> <\/a>https:\/\/op.europa.eu\/en\/publication-detail\/-\/publication\/3b096b37-300a-11e9-8d0401aa75ed71a1\/language-en\/format-PDF<\/li><li>ORPHANET (The reference portal for information on rare diseases and orphan drugs) <a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease.php?lng=EN\">https:\/\/www.orpha.net\/consor\/cgi<\/a><a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease.php?lng=EN\">&#8211;<\/a><a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease.php?lng=EN\">bin\/Disease.php?lng=EN<\/a><a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease.php?lng=EN\"><\/a><\/li><li>OMIM (Online Mendelian Inheritance in Man) (OMIM)&nbsp;&nbsp; &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;<a href=\"https:\/\/www.ncbi.nlm.nih.gov\/omim\">https:\/\/www.ncbi.nlm.nih.gov\/omim<\/a><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/omim\"><\/a><\/li><li>ERN (European Reference Networks) <a href=\"https:\/\/ec.europa.eu\/health\/ern_en\">https:\/\/ec.europa.eu\/health\/ern_en<\/a><a href=\"https:\/\/ec.europa.eu\/health\/ern_en\"><\/a><\/li><li>EURORDIS (European Organisation for Rare Diseases) <a href=\"https:\/\/www.eurordis.org\/\">https:\/\/www.eurordis.org\/<\/a><a href=\"https:\/\/www.eurordis.org\/\"><\/a><\/li><li>SAZCH (Slovensk\u00e1 aliancia zriedkav\u00fdch chor\u00f4b) <a href=\"http:\/\/sazch.sk\/aliancia-zch\/o-nas\/\">http:\/\/sazch.sk\/aliancia<\/a><a href=\"http:\/\/sazch.sk\/aliancia-zch\/o-nas\/\">&#8211;<\/a><a href=\"http:\/\/sazch.sk\/aliancia-zch\/o-nas\/\">zch\/o<\/a><a href=\"http:\/\/sazch.sk\/aliancia-zch\/o-nas\/\">&#8211;<\/a><a href=\"http:\/\/sazch.sk\/aliancia-zch\/o-nas\/\">nas\/<\/a><a href=\"http:\/\/sazch.sk\/aliancia-zch\/o-nas\/\"><\/a><\/li><li>IRDIrC (International rare diseases research consortium) <a href=\"https:\/\/irdirc.org\/\">https:\/\/irdirc.org<\/a><a href=\"https:\/\/irdirc.org\/\"><\/a><\/li><li>Smernica Eur\u00f3pskeho parlamentu a Rady 2011\/24\/E\u00da z 9. marca 2011 o uplat\u0148ovan\u00ed pr\u00e1v pacientov pri cezhrani\u010dnej zdravotnej starostlivosti&nbsp;<\/li><li><a href=\"https:\/\/eur-lex.europa.eu\/legal-content\/SK\/AUTO\/?uri=celex:32000R0141\">Nariadenie (ES) \u010d. 141\/2000 o liekoch na ojedinel\u00e9 ochorenia<\/a><a href=\"https:\/\/eur-lex.europa.eu\/legal-content\/SK\/AUTO\/?uri=celex:32000R0141\">,<\/a> https:\/\/eurlex.europa.eu\/legal-content\/SK\/LSU\/?uri=celex:32000R0141<\/li><li>NARIADENIE EUR\u00d3PSKEHO PARLAMENTU A RADY (ES) \u010d. 1394\/2007 z 13. novembra<\/li><\/ul>\n\n\n\n<p>2007 o liekoch na inovat\u00edvnu lie\u010dbu, ktor\u00fdm sa men\u00ed a dop\u013a\u0148a smernica 2001\/83\/ES a nariadenie (ES) \u010d. 726\/2004)<\/p>\n\n\n\n<ol class=\"wp-block-list\" type=\"1\"><li>EUROCAT (European network of population-based registries for the epidemiological surveillance of congenital anomalies) <a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/eurocat_en\">https:\/\/eu<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/eurocat_en\">&#8211;<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/eurocat_en\">rd<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/eurocat_en\">&#8211;<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/eurocat_en\">platform.jrc.ec.europa.eu\/eurocat_en<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/eurocat_en\"><\/a><\/li><li>ICBDSR (International Clearinghouse for Birth Defects) <a href=\"http:\/\/www.icbdsr.org\/\">http:\/\/www.icbdsr.org\/<\/a><a href=\"http:\/\/www.icbdsr.org\/\"><\/a><\/li><li>EuroGentest <a href=\"http:\/\/www.eurogentest.org\/index.php?id=160\">http:\/\/www.eurogentest.org\/index.php?id=160<\/a><a href=\"http:\/\/www.eurogentest.org\/index.php?id=160\"><\/a><\/li><li>ESHG &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; (The &nbsp;&nbsp;&nbsp; European &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Society &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; of &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Human &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Genetics) <a href=\"https:\/\/www.eshg.org\/index.php?id=home\">https:\/\/www.eshg.org\/index.php?id=home<\/a><a href=\"https:\/\/www.eshg.org\/index.php?id=home\"><\/a><\/li><li>European Society of Human Reproduction and Embryology <a href=\"https:\/\/www.eshre.eu\/\">https:\/\/www.eshre.eu\/<\/a><a href=\"https:\/\/www.eshre.eu\/\"><\/a><\/li><li>EUROPLAN (European Project for rare Diseases National Plans Development)<\/li><\/ol>\n\n\n\n<p>European Platform on Rare Disease&nbsp; registration (EU RD Platform) <a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/_en\">https:\/\/eu<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/_en\">&#8211;<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/_en\">rd<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/_en\">platform.jrc.ec.europa.eu\/a_en<\/a><a href=\"https:\/\/eu-rd-platform.jrc.ec.europa.eu\/_en\"><\/a><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>EURORDIS position paper: Achieving Holistic Person-Centred Care to Leave No One Behindhttps:\/\/www.eurordis.org\/carepaper<\/li><li>Human Rights Council Resolution on access to medicines and vaccines&nbsp; <a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">https:\/\/www.healthpolicy<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">&#8211;<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">watch.org\/wp<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">&#8211;<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">content\/uploads\/2019\/07\/HRC<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">&#8211;<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">Resolution<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">&#8211;<\/a><a href=\"https:\/\/www.healthpolicy-watch.org\/wp-content\/uploads\/2019\/07\/HRC-Resolution-L.13-\">L.13<\/a> &nbsp;&nbsp; Access-to-Medicines-and-Vaccines-English.pdf<\/li><li>UN &nbsp;&nbsp;&nbsp;&nbsp; Convention &nbsp;&nbsp;&nbsp;&nbsp;&nbsp; on &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; the &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Rights &nbsp; of &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; People with &nbsp;&nbsp;&nbsp;&nbsp; Disabilities <a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">https:\/\/www.un.org\/development\/desa\/disabilities\/convention<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">&#8211;<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">on<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">&#8211;<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">the<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">&#8211;<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">rights<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">&#8211;<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">of<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">&#8211;<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">persons<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">&#8211;<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">with<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\">disabilities.html<\/a><a href=\"https:\/\/www.un.org\/development\/desa\/disabilities\/convention-on-the-rights-of-persons-with-disabilities.html\"><\/a><\/li><li>Report of the Special Rapporteur on the rights of persons with disabilities to 73rd Session of the<\/li><\/ul>\n\n\n\n<p>UNGA A\/73\/211\/Rev.1. <a href=\"http:\/\/undocs.org\/A\/73\/211\/Rev.1\">http:\/\/undocs.org\/A\/73\/211\/Rev.1<\/a><a href=\"http:\/\/undocs.org\/A\/73\/211\/Rev.1\"><\/a><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>State &nbsp;&nbsp; of &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; UHC &nbsp;&nbsp; implementation report &nbsp; https:\/\/www.uhc2030.org\/what-wedo\/voices\/accountability\/the-state-of-uhc-commitment\/<\/li><\/ul>\n\n\n\n<p>\u00a0Prevzat\u00e9 z <a href=\"https:\/\/rokovania.gov.sk\/RVL\/Material\/25963\/1\">\u00daradu vl\u00e1dy SR<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>N&aacute;rodn&yacute; program zdravotnej starostlivosti o pacientov so zriedkav&yacute;mi chorobami do roku 2030 (&#271;alej len &bdquo;NP 2030&ldquo;) bol vypracovan&yacute; Komisiou Ministerstva zdravotn&iacute;ctva Slovenskej republiky pre zriedkav&eacute; choroby (Rare Diseases &ndash; RD; &#271;alej len &bdquo;Komisia&ldquo;) na z&aacute;klade &uacute;lohy z uznesenia vl&aacute;dy Slovenskej &hellip; <a href=\"https:\/\/slanedeti.sk\/cms\/narodny-program-zdravotnej-starostlivosti-o-pacientov-so-zriedkavymi-chorobami-do-roku-2030\/2158\">Continued<\/a><\/p>\n","protected":false},"author":3,"featured_media":2160,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[2],"tags":[],"class_list":["post-2158","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-informacie"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>N\u00e1rodn\u00fd program zdravotnej starostlivosti o pacientov so zriedkav\u00fdmi chorobami do roku 2030 - Slan\u00e9 deti<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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