{"id":920,"date":"2013-03-04T15:34:31","date_gmt":"2013-03-04T13:34:31","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\/201303"},"modified":"2017-09-03T13:30:12","modified_gmt":"2017-09-03T12:30:12","slug":"zriedkave-choroby-na-slovensku-forum-odbornikov-2","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\/920","title":{"rendered":"Zriedkav\u00e9 choroby na Slovensku – f\u00f3rum odborn\u00edkov"},"content":{"rendered":"

D\u0148a 28. febru\u00e1ra 2013 sa konala\u00a0konferencia o zriedkav\u00fdch chorob\u00e1ch – f\u00f3rum odborn\u00edkov, pri pr\u00edle\u017eitosti d\u0148a zriedkav\u00fdch chor\u00f4b, ktor\u00fd je\u00a0tie\u017e 28. febru\u00e1ra.<\/p>\n

Po minulom roku som sa celkom te\u0161ila na novinky, ktor\u00e9 bud\u00fa v tejto oblasti predstaven\u00e9. Predn\u00e1\u0161ky mali pomerne \u0161irok\u00fd z\u00e1ber: od predstavenia legislat\u00edvy, eur\u00f3pskych organiz\u00e1ci\u00ed, \u0161pecializovan\u00fdch centier a\u017e po pacientsk\u00e9 organiz\u00e1cie.<\/p>\n

Tento rok n\u00e1s svojou podporou a prezent\u00e1ciami pote\u0161ili aj zahrani\u010dn\u00ed hostia z mimovl\u00e1dnej organiz\u00e1cie EURORDIS, ktor\u00e1 zdru\u017euje pacientov a organiz\u00e1cie akt\u00edvnych v oblasti zriedkav\u00fdch chor\u00f4b (ZCH) na eur\u00f3pskej \u00farovni. Prv\u00e9 predn\u00e1\u0161ky boli venovan\u00e9 legislat\u00edve – tvorbe n\u00e1rodn\u00e9ho pl\u00e1nu starostlivosti o pacientov so ZCH, na ktorom m\u00f4\u017ee aj na\u0161e zdru\u017eenie akt\u00edvne participova\u0165 ako \u010dlen Slovenskej aliancie zriedkav\u00fdch chor\u00f4b. \u010ealej boli predstaven\u00e9 dve centr\u00e1 pre lie\u010dbu ZCH a to Centrum dedi\u010dn\u00fdch metabolick\u00fdch por\u00fach a centrum pre pre p\u013e\u00facnu art\u00e9riov\u00fa hypertenziu.<\/p>\n

Po kr\u00e1tkej prest\u00e1vke pokra\u010dovali odborn\u00e9 predn\u00e1\u0161ky o liekoch na ZCH tzv. Orphan drugs dostupn\u00fdch v Eur\u00f3pskej \u00fanii a pre porovnanie sa druh\u00e1 predn\u00e1\u0161ka t\u00fdkala t\u00fdch ist\u00fdch liekov dostupn\u00fdch na Slovensku. Zauj\u00edmavos\u0165ou je, \u017ee hoci sa st\u00e1le prezentuje, \u017ee lie\u010dba pacientov so ZCH v r\u00e1mci Eur\u00f3py je extr\u00e9mne n\u00e1ro\u010dn\u00e1, re\u00e1lne tvor\u00ed len necel\u00e9 3% finan\u010dn\u00fdch prostriedkov vynalo\u017een\u00fdch na lie\u010dbu v\u0161etk\u00fdch pacientov. Odhaduje sa, \u017ee toto \u010d\u00edslo bude narasta\u0165 v priebehu 4 rokov na 4,6%. Hlavn\u00e1 rev\u00edzna lek\u00e1rka zo V\u0161eobecnej zdravotnej pois\u0165ovne n\u00e1m predstavila pr\u00edstup pois\u0165ovne k pacientom zo ZCH.<\/p>\n

Ve\u013emi zauj\u00edmavou bola predn\u00e1\u0161ka o skr\u00edningu ZCH. Od 15.6.2012 sa v r\u00e1mci skr\u00edngu m\u00f4\u017ee odhali\u0165 a\u017e 13 chor\u00f4b, \u010do je ve\u013ek\u00fd progres v tejto oblasti. V s\u00fa\u010dasnosti je viac ako 90% z\u00e1chyt jednotliv\u00fdch chor\u00f4b pri \u017eivonaroden\u00fdch de\u0165och. Zo syst\u00e9mu tzv. „unikaj\u00fa“ deti, ktor\u00e9 sa nerodia na \u00fazemi Slovenskej republiky. Zauj\u00edmavou bola aj predn\u00e1\u0161ka o \u00falohe n\u00e1rodn\u00e9ho centra zdravotn\u00edckych inform\u00e1ci\u00ed v dostupnosti \u00fadajov o v\u00fdskyte ZCH. Hlavn\u00fdm probl\u00e9mom je ne\u00faplnos\u0165 t\u00fdchto inform\u00e1ci\u00ed, \u010do bola v\u00fdzva najm\u00e4 do radov v\u0161eobecn\u00fdch lek\u00e1rov. Apelom pre pacientske organiz\u00e1cie bola predn\u00e1\u0161ka \u00daloha pacientskych organiz\u00e1ci\u00ed. Boli tu nazna\u010den\u00e9 aktivity a to zapojenie sa do eur\u00f3pskych zdru\u017een\u00ed, akt\u00edvny pr\u00edstup pacientov na z\u00fa\u010dast\u0148ovan\u00ed sa kempom, workshopov a in\u00fdch podujat\u00ed ako aj ich organizovanie. Pr\u00e1ve tieto sk\u00fasenosti predstavila Organiz\u00e1cia muskul\u00e1rknych dystrofikov v SR. Po\u010das konferencie sme mali mo\u017enos\u0165 zozn\u00e1mi\u0165 sa s postermi, ktor\u00e9 pripravili lek\u00e1ri a pacientsk\u00e9 ograniz\u00e1cie.<\/p>\n

\"201203062047_logo_ZCH\"<\/div>\n","protected":false},"excerpt":{"rendered":"

Dňa 28. februára 2013 sa konala konferencia o zriedkavých chorobách – fórum odborníkov, pri príležitosti dňa zriedkavých chorôb, ktorý je tiež 28. februára. Po minulom roku som sa celkom tešila na novinky, ktoré budú v tejto oblasti predstavené. Prednášky mali pomerne široký … 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-920","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-priatelia-slanych-deti","tag-konferencia"],"yoast_head":"\nZriedkav\u00e9 choroby na Slovensku - f\u00f3rum odborn\u00edkov - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"D\u0148a 28. febru\u00e1ra 2013 sa konala slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - f\u00f3rum odborn\u00edkov pri pr\u00edle\u017eitosti d\u0148a zriedkav\u00fdch chor\u00f4b, ktor\u00fd je tie\u017e 28. febru\u00e1ra.\" \/>\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\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\/920\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Zriedkav\u00e9 choroby na Slovensku - f\u00f3rum odborn\u00edkov - Slan\u00e9 deti\" \/>\n<meta property=\"og:description\" content=\"D\u0148a 28. febru\u00e1ra 2013 sa konala slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch - f\u00f3rum odborn\u00edkov pri pr\u00edle\u017eitosti d\u0148a zriedkav\u00fdch chor\u00f4b, ktor\u00fd je tie\u017e 28. febru\u00e1ra.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/slanedeti.sk\/cms\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\/920\" \/>\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=\"2013-03-04T13:34:31+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2017-09-03T12:30:12+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=\"2 min\u00faty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\\\/920#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\\\/920\"},\"author\":{\"name\":\"Kika\",\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/#\\\/schema\\\/person\\\/8d4185e268823ccbc166a1895f1b7938\"},\"headline\":\"Zriedkav\u00e9 choroby na Slovensku – f\u00f3rum odborn\u00edkov\",\"datePublished\":\"2013-03-04T13:34:31+00:00\",\"dateModified\":\"2017-09-03T12:30:12+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\\\/920\"},\"wordCount\":495,\"image\":{\"@id\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\\\/920#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\\\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\\\/920\",\"url\":\"https:\\\/\\\/slanedeti.sk\\\/cms\\\/zriedkave-choroby-na-slovensku-forum-odbornikov-2\\\/920\",\"name\":\"Zriedkav\u00e9 choroby na Slovensku - 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