{"id":1980,"date":"2017-09-03T14:07:56","date_gmt":"2017-09-03T13:07:56","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/?post_type=portfolio&p=1980"},"modified":"2017-12-21T07:59:18","modified_gmt":"2017-12-21T06:59:18","slug":"priatelia-slanych-deti-o-z","status":"publish","type":"portfolio","link":"https:\/\/slanedeti.sk\/cms\/portfolio\/priatelia-slanych-deti-o-z","title":{"rendered":"Priatelia slan\u00fdch det\u00ed, o.z."},"content":{"rendered":"

Priatelia slan\u00fdch det\u00ed je ob\u010dianske zdru\u017eenie, ktor\u00e9 vzniklo v roku 2005. Jeho hlavn\u00fdm cie\u013eom je pomoc \u013eu\u010fom s ochoren\u00edm cystick\u00e1 fibr\u00f3za (CF). Cystick\u00e1 fibr\u00f3za je zriedkav\u00e9, dedi\u010dn\u00e9 a nevylie\u010dite\u013en\u00e9 ochorenie. Vyzna\u010duje sa poruchou metabolizmu chloridov v organizme, \u010do m\u00e1 z\u00e1va\u017en\u00e9 mnohostrann\u00e9 d\u00f4sledky. Jedn\u00fdm zo znakov ochorenia je aj ve\u013emi slan\u00fd pot, z \u010doho plynie aj pomenovanie slan\u00e9 deti<\/strong>.<\/p>\n

Lie\u010dba je ve\u013emi n\u00e1kladn\u00e1 a nam\u00e1hav\u00e1 aj po psychickej str\u00e1nke, nielen pre pacienta, ale pre cel\u00fa rodinu.<\/p>\n

Na\u0161e zdru\u017eenie sa sna\u017e\u00ed tieto negat\u00edvne dopady zmier\u0148ova\u0165. Poskytuje svoju pomoc v\u0161etk\u00fdm \u013eu\u010fom s cystickou fibr\u00f3zou a ich rodin\u00e1m, ktor\u00ed n\u00e1s o \u0148u po\u017eiadaj\u00fa. Na\u0161a pomoc je finan\u010dn\u00e9ho charakteru a informovania prostredn\u00edctvom webstr\u00e1nky.<\/p>\n

Od svojho vzniku organizujeme benefi\u010dn\u00fd koncert Slan\u00e9 mosty, ktor\u00e9ho v\u00fd\u0165a\u017eok je ur\u010den\u00fd v\u00fdhradne pre slan\u00e9 deti. Finan\u010dn\u00e9 prostriedky z\u00edskavame aj z asign\u00e1ci\u00ed 2% a od sponzorov. Za \u00fa\u010delom informovania pacientov, odbornej aj \u0161irokej verejnosti prev\u00e1dzkujeme webstr\u00e1nku www.slanedeti.sk a k nej pridru\u017een\u00e9 internetov\u00e9 informa\u010dn\u00e9 slu\u017eby \u2013 kan\u00e1l na youtub a str\u00e1nku na facebooku.<\/p>\n

\u0160irok\u00fa verejnos\u0165 informujeme tie\u017e prostredn\u00edctvom propaga\u010dn\u00fdch materi\u00e1lov, trhov\u00edsk neziskov\u00fdch organiz\u00e1ci\u00ed.<\/p>\n

Sna\u017e\u00edme sa akt\u00edvne komunikova\u0165 s \u00faradmi, ministerstvami, zdravotn\u00fdmi pois\u0165ov\u0148ami. Spolupracujeme s centrami cystickej fibr\u00f3zy, s lek\u00e1rmi, rehabilita\u010dn\u00fdmi pracovn\u00edkmi ako aj s \u010fal\u0161\u00edmi odborn\u00edkmi, ktor\u00ed sa venuj\u00fa tejto problematike. Sme v kontakte s pacientsk\u00fdmi zdru\u017eeniami v SR aj v zahrani\u010d\u00ed. V roku 2012 sme sa stali \u010dlenom Aliancie zriedkav\u00fdch chor\u00f4b.<\/p>\n

P\u00f4sobnos\u0165 zdru\u017eenia je cel\u00e1 SR. Zdru\u017eenie riadi spr\u00e1vna rada. Pri na\u0161ej pr\u00e1ci n\u00e1m pom\u00e1ha viacero dobrovo\u013en\u00edkov. Nebudujeme \u010dlensk\u00fa z\u00e1klad\u0148u, ale v\u00edtame v\u0161etk\u00fdch, \u010do maj\u00fa z\u00e1ujem dobrovo\u013ene sa zapoji\u0165 do na\u0161ich aktiv\u00edt.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Priatelia slaných detí je občianske združenie, ktoré vzniklo v roku 2005. Jeho hlavným cieľom je pomoc ľuďom s ochorením cystická fibróza (CF). Cystická fibróza je zriedkavé, dedičné a nevyliečiteľné ochorenie. Vyznačuje sa poruchou metabolizmu chloridov v organizme, čo má závažné … Continued<\/a><\/p>\n","protected":false},"author":3,"featured_media":1984,"menu_order":10,"comment_status":"closed","ping_status":"closed","template":"","meta":{"kt_blocks_editor_width":""},"portfolio-type":[],"class_list":["post-1980","portfolio","type-portfolio","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nPriatelia slan\u00fdch det\u00ed, o.z. - 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\" href=\"https:\/\/slanedeti.sk\/cms\/portfolio\/priatelia-slanych-deti-o-z\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Priatelia slan\u00fdch det\u00ed, o.z. - Slan\u00e9 deti\" \/>\n<meta property=\"og:description\" content=\"Priatelia slaných detí je občianske združenie, ktoré vzniklo v roku 2005. Jeho hlavným cieľom je pomoc ľuďom s ochorením cystická fibróza (CF). Cystická fibróza je zriedkavé, dedičné a nevyliečiteľné ochorenie. 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