D\u0148a 29. febru\u00e1ra 2012 sa konala Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch. Tento de\u0148 bol z\u00e1rove\u0148 vyhl\u00e1sen\u00fd za de\u0148 zriedkav\u00fdch chor\u00f4b. Odhaduje sa, \u017ee v eur\u00f3pskej \u00fanii\u00a0 \u017eije 27-36 mili\u00f3nov \u013eud\u00ed s t\u00fdmito diagn\u00f3zami.\u00a0Tieto choroby postihn\u00fa po\u010das \u017eivota 6-8% popul\u00e1cie v eur\u00f3pskej \u00fanii.<\/p>\n
Konferencia bola rozdelen\u00e1 do troch blokov, kde v prvom bloku boli predn\u00e1\u0161ky zameran\u00e9 na medzin\u00e1rodn\u00e9 organiz\u00e1cie EUCERD a EURORDIS\u00a0a liekov\u00fa politiku v tejto oblasti. P.\u00a0Cis\u00e1rik n\u00e1m s pote\u0161en\u00edm ozn\u00e1mil, \u017ee od 1.3.2012 sa za\u010d\u00edna pilotn\u00fd projekt, v r\u00e1mci ktor\u00e9ho sa bude testova\u0165 \u010fal\u0161\u00edch 11 zriedkav\u00fdch chor\u00f4b v skr\u00edningovom centre Bansk\u00e1 Bystrica. O aktivit\u00e1ch Eurordisu informovala pani \u0160tep\u00e1nkov\u00e1.\u00a0 Hlavn\u00fdm \u00faspechom je, \u017ee d\u0148a 8.6. 2009 bola prijat\u00e1\u00a0 Eur\u00f3pskou komisiou\u00a0 smernica\u00a0 Odpor\u00fa\u010danie\u00a0 Rady o Eur\u00f3pskom postupe v oblasti Zriedkav\u00fdch chor\u00f4b. \u010eal\u0161ou smernicou, ktor\u00e1 sa n\u00e1m dostala do pozornosti je Smernica o uplat\u0148ovan\u00ed pr\u00e1v pacientov pri cezhrani\u010dnej zdravotnej starostlivosti.<\/p>\n
![\"201203062047_logo_ZCH\"](\"https:\/\/slanedeti.sk\/cms\/picture_migration\/201203062047_logo_ZCH.png\" "\\"201203062047_logo_ZCH\\"")
<\/div>\n
M\u0148a osobne zaujala predn\u00e1\u0161ka p. Folt\u00e1novej, ktor\u00e1 n\u00e1s obozn\u00e1mila s liekmi a ich dostupnosti v SR. Dostupnos\u0165 t\u00fdchto liekov je na \u00farovni 52%, \u010do predstavuje 32 liekov na zriedkav\u00e9 choroby. Druh\u00fd blok bol venovan\u00fd expertn\u00fdm centr\u00e1m a n\u00e1rodn\u00fdm registrom. N\u00e1rodn\u00fd register pre lie\u010dbu cystickej fibr\u00f3zy predstavila\u00a0 pani doktorka Kayserov\u00e1. Diagn\u00f3za cystick\u00e1 fibr\u00f3za\u00a0u\u017e d\u00e1vno nie je detskou diagn\u00f3zou, k \u010domu prispieva aj kvalitnej\u0161ia lie\u010dba. 30% pacientov je odhalen\u00fdch a\u017e v dospelom veku a m\u00e1me 7% pacientov nad 60 rokov. \u010ealej boli predstaven\u00e9 registre\u00a0hemof\u00edlie a vroden\u00fdch krv\u00e1cav\u00fdch chor\u00f4b spolu s centrom pre pulmon\u00e1lnu arteri\u00e1lnu hypertenziu.<\/p>\n
\u010eal\u0161ie predn\u00e1\u0161ky boli zameran\u00e9 na dedi\u010dn\u00e9 metabolick\u00e9 poruchy a diagnostiku a lie\u010dbu heredit\u00e1rnych n\u00e1dorov\u00fdch syndr\u00f3mov. Posledn\u00fd blok predstavil medic\u00ednsku a soci\u00e1lnu starostlivos\u0165.\u00a0S postupmi, schva\u013eovan\u00edm a pr\u00edstupom k zriedkav\u00fdm chorob\u00e1m\u00a0 n\u00e1s obozn\u00e1mila\u00a0 p.\u00a0Midlerov\u00e1 z pois\u0165ovne UNION, ktor\u00e1 ako jedin\u00e1 z\u00e1stupky\u0148a zdravotn\u00fdch pois\u0165ovn\u00ed mala \u201eodvahu\u201c pr\u00eds\u0165 na toto podujatie.\u00a0Je naozaj len na \u0161kodu, \u017ee nepri\u0161li aj z\u00e1stupcovia pois\u0165ovne D\u00f4vera a hlavne V\u0160ZP, ktor\u00e1 m\u00e1 v registri najviac pacientov. V minulom roku bola zalo\u017een\u00e1 Aliancia zriedkav\u00fdch chor\u00f4b, ktor\u00e1 zastre\u0161uje\u00a012 pacientsk\u00fdch organiz\u00e1cii. Vo febru\u00e1ri sa konalo ustanovuj\u00face stretnutie a na konferencii bola prezentovan\u00e1 hlavn\u00e1 my\u0161lienka aliancie, jej poslanie a aktivity. Cystick\u00e1 fibr\u00f3za patr\u00ed medzi\u00a0 zriedkav\u00e9 choroby\u00a0a zdru\u017eenie Priatelia slan\u00fdch det\u00ed je \u010dlenom Aliancie. Poslednou a nemenej zauj\u00edmavou bola predn\u00e1\u0161ka Patient Empowement, ktor\u00e1 predstavila posil\u0148ovanie kompetenci\u00ed pacientov prostredn\u00edctvom cielen\u00e9ho vzdel\u00e1vania.<\/p>\n
Konferenciu pova\u017eujem za ve\u013emi kvalitn\u00e9 a profesion\u00e1lne pripraven\u00e9 podujatie, ktor\u00e9 bude d\u00fafam na rovnakej \u00farovni pokra\u010dova\u0165 aj v \u010fal\u0161\u00edch rokoch.<\/p>\n
Za na\u0161e zdru\u017eenie sa z\u00fa\u010dastnili p. \u0160ipekov\u00e1 a p. Lacenov\u00e1.<\/p>\n","protected":false},"excerpt":{"rendered":"
Dňa 29. februára 2012 sa konala Prvá slovenská konferencia o zriedkavých chorobách. Tento deň bol zároveň vyhlásený za deň zriedkavých chorôb. Odhaduje sa, že v európskej únii žije 27-36 miliónov ľudí s týmito diagnózami. Tieto choroby postihnú počas života 6-8% populácie … Continued<\/a><\/p>\n","protected":false},"author":3,"featured_media":1096,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[264],"tags":[257],"class_list":["post-888","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-priatelia-slanych-deti","tag-konferencia"],"yoast_head":"\nPrv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"D\u0148a 29. febru\u00e1ra 2012 sa konala Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch. Cystick\u00e1 fibr\u00f3za patr\u00ed medzi zriedkav\u00e9 choroby.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - Slan\u00e9 deti\" \/>\n<meta property=\"og:description\" content=\"D\u0148a 29. febru\u00e1ra 2012 sa konala Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch. Cystick\u00e1 fibr\u00f3za patr\u00ed medzi zriedkav\u00e9 choroby.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888\" \/>\n<meta property=\"og:site_name\" content=\"Slan\u00e9 deti\" \/>\n<meta property=\"article:publisher\" content=\"http:\/\/www.facebook.com\/slanedeti\" \/>\n<meta property=\"article:published_time\" content=\"2012-03-06T18:39:45+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2017-09-03T12:30:14+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/slanedeti.sk\/cms\/wp-content\/uploads\/2013\/03\/logo_ZCH.png\" \/>\n\t<meta property=\"og:image:width\" content=\"210\" \/>\n\t<meta property=\"og:image:height\" content=\"182\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Kika\" \/>\n<meta name=\"twitter:label1\" content=\"Autor\" \/>\n\t<meta name=\"twitter:data1\" content=\"Kika\" \/>\n\t<meta name=\"twitter:label2\" content=\"Predpokladan\u00fd \u010das \u010d\u00edtania\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 min\u00faty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888\"},\"author\":{\"name\":\"Kika\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/#\\\/schema\\\/person\\\/8d4185e268823ccbc166a1895f1b7938\"},\"headline\":\"Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch\",\"datePublished\":\"2012-03-06T18:39:45+00:00\",\"dateModified\":\"2017-09-03T12:30:14+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888\"},\"wordCount\":520,\"image\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/wp-content\\\/uploads\\\/2013\\\/03\\\/logo_ZCH.png\",\"keywords\":[\"konferencia\"],\"articleSection\":[\"Priatelia slan\u00fdch det\u00ed\"],\"inLanguage\":\"sk-SK\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888\",\"url\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888\",\"name\":\"Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - Slan\u00e9 deti\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/wp-content\\\/uploads\\\/2013\\\/03\\\/logo_ZCH.png\",\"datePublished\":\"2012-03-06T18:39:45+00:00\",\"dateModified\":\"2017-09-03T12:30:14+00:00\",\"author\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/#\\\/schema\\\/person\\\/8d4185e268823ccbc166a1895f1b7938\"},\"description\":\"D\u0148a 29. febru\u00e1ra 2012 sa konala Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch. Cystick\u00e1 fibr\u00f3za patr\u00ed medzi zriedkav\u00e9 choroby.\",\"inLanguage\":\"sk-SK\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"sk-SK\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\\\/888#primaryimage\",\"url\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/wp-content\\\/uploads\\\/2013\\\/03\\\/logo_ZCH.png\",\"contentUrl\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/wp-content\\\/uploads\\\/2013\\\/03\\\/logo_ZCH.png\",\"width\":210,\"height\":182,\"caption\":\"logo ZCH\"},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/#website\",\"url\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/\",\"name\":\"Slan\u00e9 deti\",\"description\":\"Inform\u00e1cie o cystickej fibr\u00f3ze\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"sk-SK\"},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/#\\\/schema\\\/person\\\/8d4185e268823ccbc166a1895f1b7938\",\"name\":\"Kika\",\"url\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/author\\\/kika\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - Slan\u00e9 deti","description":"D\u0148a 29. febru\u00e1ra 2012 sa konala Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch. Cystick\u00e1 fibr\u00f3za patr\u00ed medzi zriedkav\u00e9 choroby.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888","og_locale":"sk_SK","og_type":"article","og_title":"Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - Slan\u00e9 deti","og_description":"D\u0148a 29. febru\u00e1ra 2012 sa konala Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch. Cystick\u00e1 fibr\u00f3za patr\u00ed medzi zriedkav\u00e9 choroby.","og_url":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888","og_site_name":"Slan\u00e9 deti","article_publisher":"http:\/\/www.facebook.com\/slanedeti","article_published_time":"2012-03-06T18:39:45+00:00","article_modified_time":"2017-09-03T12:30:14+00:00","og_image":[{"width":210,"height":182,"url":"https:\/\/slanedeti.sk\/cms\/wp-content\/uploads\/2013\/03\/logo_ZCH.png","type":"image\/png"}],"author":"Kika","twitter_misc":{"Autor":"Kika","Predpokladan\u00fd \u010das \u010d\u00edtania":"3 min\u00faty"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888#article","isPartOf":{"@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888"},"author":{"name":"Kika","@id":"https:\/\/slanedeti.sk\/cms\/#\/schema\/person\/8d4185e268823ccbc166a1895f1b7938"},"headline":"Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch","datePublished":"2012-03-06T18:39:45+00:00","dateModified":"2017-09-03T12:30:14+00:00","mainEntityOfPage":{"@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888"},"wordCount":520,"image":{"@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888#primaryimage"},"thumbnailUrl":"https:\/\/slanedeti.sk\/cms\/wp-content\/uploads\/2013\/03\/logo_ZCH.png","keywords":["konferencia"],"articleSection":["Priatelia slan\u00fdch det\u00ed"],"inLanguage":"sk-SK"},{"@type":"WebPage","@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888","url":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888","name":"Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - Slan\u00e9 deti","isPartOf":{"@id":"https:\/\/slanedeti.sk\/cms\/#website"},"primaryImageOfPage":{"@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888#primaryimage"},"image":{"@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888#primaryimage"},"thumbnailUrl":"https:\/\/slanedeti.sk\/cms\/wp-content\/uploads\/2013\/03\/logo_ZCH.png","datePublished":"2012-03-06T18:39:45+00:00","dateModified":"2017-09-03T12:30:14+00:00","author":{"@id":"https:\/\/slanedeti.sk\/cms\/#\/schema\/person\/8d4185e268823ccbc166a1895f1b7938"},"description":"D\u0148a 29. febru\u00e1ra 2012 sa konala Prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch. Cystick\u00e1 fibr\u00f3za patr\u00ed medzi zriedkav\u00e9 choroby.","inLanguage":"sk-SK","potentialAction":[{"@type":"ReadAction","target":["https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888"]}]},{"@type":"ImageObject","inLanguage":"sk-SK","@id":"https:\/\/slanedeti.sk\/cms\/prva-slovenska-konferencia-o-zriedkavych-chorobach-2\/888#primaryimage","url":"https:\/\/slanedeti.sk\/cms\/wp-content\/uploads\/2013\/03\/logo_ZCH.png","contentUrl":"https:\/\/slanedeti.sk\/cms\/wp-content\/uploads\/2013\/03\/logo_ZCH.png","width":210,"height":182,"caption":"logo ZCH"},{"@type":"WebSite","@id":"https:\/\/slanedeti.sk\/cms\/#website","url":"https:\/\/slanedeti.sk\/cms\/","name":"Slan\u00e9 deti","description":"Inform\u00e1cie o cystickej fibr\u00f3ze","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/slanedeti.sk\/cms\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"sk-SK"},{"@type":"Person","@id":"https:\/\/slanedeti.sk\/cms\/#\/schema\/person\/8d4185e268823ccbc166a1895f1b7938","name":"Kika","url":"https:\/\/slanedeti.sk\/cms\/author\/kika"}]}},"_links":{"self":[{"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/posts\/888","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/comments?post=888"}],"version-history":[{"count":0,"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/posts\/888\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/media\/1096"}],"wp:attachment":[{"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/media?parent=888"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/categories?post=888"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/slanedeti.sk\/cms\/wp-json\/wp\/v2\/tags?post=888"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}