{"id":901,"date":"2012-06-18T15:20:50","date_gmt":"2012-06-18T13:20:50","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/aktivity-priatelov-slanych-deti-v-roku-2011-2\/201206"},"modified":"2017-09-03T13:29:31","modified_gmt":"2017-09-03T12:29:31","slug":"aktivity-priatelov-slanych-deti-v-roku-2011-2","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/aktivity-priatelov-slanych-deti-v-roku-2011-2\/901","title":{"rendered":"Aktivity Priate\u013eov slan\u00fdch det\u00ed v roku 2011"},"content":{"rendered":"

V roku 2011 pokra\u010dovalo na\u0161e ob\u010dianske zdru\u017eenie v pravideln\u00fdch aktivit\u00e1ch, ktor\u00fdmi s\u00fa benefi\u010dn\u00fd koncert a soci\u00e1lne poradenstvo. Najv\u00e4\u010d\u0161\u00ed pokrok sme zaznamenali v rozvoji na\u0161ej webovej str\u00e1nky, ktor\u00e1 v\u00fdrazne zv\u00fd\u0161ila povedomie o diagn\u00f3ze cystick\u00e1 fibr\u00f3za.<\/p>\n

25. marca 2011 sme sa z\u00fa\u010dastnili celoslovensk\u00e9ho stretnutia z\u00e1stupcov pacientskych organiz\u00e1ci\u00ed<\/strong> v Pie\u0161\u0165anoch, kde sme mohli \u010derpa\u0165 zo sk\u00fasenost\u00ed in\u00fdch pacientskych organiz\u00e1ci\u00ed aj z\u00edska\u0165 nov\u00e9 kontakty. Jednou zo sprievodn\u00fdch akci\u00ed konferencie bol prieskum zameran\u00fd na zis\u0165ovanie aktu\u00e1lnej situ\u00e1cie v pacientskych zdru\u017eeniach na Slovensku. Inici\u00e1torom a realiz\u00e1torom prieskumu bolo zdru\u017eenie Slovensk\u00fd pacient.<\/p>\n

23. okt\u00f3bra 2011 sme organizovali benefi\u010dn\u00fd koncert Slan\u00e9 mosty<\/strong> pod z\u00e1\u0161titou charizmatickej Andy Timkovej. Koncert sa konal Dome kult\u00fary Liptovsk\u00fd Mikul\u00e1\u0161. Div\u00e1kov ve\u010derom sprev\u00e1dzali Danka Strculov\u00e1 a Matej \u201eSAJFA\u201c Cifra.Tento rok n\u00e1s umelecky podporili Martin Harich, Peter \u0160est\u00e1k, Katka Ko\u0161\u010dov\u00e1, Nela Pociskov\u00e1, Marcel Palonder a ako ka\u017ed\u00fd rok aj \u017eiaci ZU\u0160 J. L. Bellu.V\u0161etci \u00fa\u010dinkuj\u00faci vyst\u00fapili bez n\u00e1roku na honor\u00e1r.<\/p>\n

\"201110310752_slanemosty2011_1\"<\/div>\n

Akt\u00edvne sme sa zap\u00e1jali do pripomienkov\u00fdch konan\u00ed<\/strong> ako jeden z \u010dlenov Rady vl\u00e1dy SR pre osoby so zdravotn\u00fdm postihnut\u00edm sekcia chronick\u00fdch ochoren\u00ed. Pravidelne sme pripomienkovali z\u00e1kony t\u00fdkaj\u00face na\u0161ej diagn\u00f3zy, \u017eivota na\u0161ich pacientov.<\/p>\n

Soci\u00e1lne poradenstvo pre pacientov<\/strong> s cystickou fibr\u00f3zou a ich rodiny m\u00e1 svoje osobitn\u00e9 postavenie v r\u00e1mci mnoh\u00fdch \u010dinnosti v na\u0161om zdru\u017een\u00ed. Popri zverej\u0148ovan\u00ed aktu\u00e1lnych inform\u00e1cii so soci\u00e1lnou problematikou prostredn\u00edctvom webstr\u00e1nky, sme sa po\u010das cel\u00e9ho roku sna\u017eili rodin\u00e1m v r\u00e1mci cel\u00e9ho Slovenska poskytn\u00fa\u0165 pomoc formou individu\u00e1lnej soci\u00e1lnej pr\u00e1ce. Na\u0161a soci\u00e1lna pracovn\u00ed\u010dka bola v kontakte s pacientmi a ich rodinami, naj\u010dastej\u0161\u00edmi rie\u0161en\u00fdmi probl\u00e9mami boli v\u00fdnimky zdravotn\u00fdch pois\u0165ovn\u00ed pre preplatenie liekov alebo zdravotn\u00edckych pom\u00f4cok, pomoc pri podan\u00ed \u017eiadosti o kompenz\u00e1cie zv\u00fd\u0161en\u00fdch v\u00fddavkov, integr\u00e1cia pacientov v \u0161kole alebo v pr\u00e1ci, inform\u00e1cie o mo\u017enostiach opatrovate\u013estva. Na\u0161a pracovn\u00ed\u010dka bola \u010dasto v priamom kontakte s in\u0161tit\u00faciami, ktor\u00e9 dan\u00e9 z\u00e1le\u017eitosti rie\u0161ia (zdravotn\u00e9 pois\u0165ovne, \u00farady soci\u00e1lnych vec\u00ed, Soci\u00e1lna pois\u0165ov\u0148a). Poradenstvo sme poskytli 25 klientom.<\/p>\n

\"201206181546_ruky\"<\/div>\n

V roku 2011 sme na webe slanedeti.sk<\/strong> zverejnili celkovo 16 \u010dl\u00e1nkov, z toho 5 odborn\u00fdch, 8 informa\u010dn\u00fdch a 3 popul\u00e1rno n\u00e1u\u010dn\u00e9. N\u00e1v\u0161tevnos\u0165 sa za rok 2011 zv\u00fd\u0161ila o 30%. V j\u00fani bol vytvoren\u00fd a n\u00e1sledne k webstr\u00e1nke pridru\u017een\u00fd kan\u00e1l na youtube pre zdie\u013eanie vide\u00ed s tematikou cystick\u00e1 fibr\u00f3za. Kan\u00e1l obsahuje z\u00e1znamy benefi\u010dn\u00fdch koncertov organizovan\u00fdch zdru\u017een\u00edm Priatelia slan\u00fdch det\u00ed, vide\u00e1 vz\u0165ahuj\u00face sa k \u010dl\u00e1nkom uverejnen\u00fdm na webstr\u00e1nke a informat\u00edvne vide\u00e1 o cystickej fibr\u00f3ze. Webstr\u00e1nka pre\u0161la koncom roka celkovou obnovou, vr\u00e1tania spustenia str\u00e1nky na soci\u00e1lnej sieti facebook.com\/slanedeti.<\/p>\n

V roku 2011 sme z\u00edskali 5112,80 Eur z asign\u00e1cii 2% z dan\u00ed<\/strong>. Z t\u00fdchto prostriedkov sme poskytli finan\u010dn\u00fa pomoc 23 pacientom s cystickou fibr\u00f3zou, resp. ich rodin\u00e1m v celkovej \u010diastke 3606,76 Eur (n\u00e1kup prenosn\u00e9ho inhal\u00e1tora e-flow, pr\u00edmorsk\u00fd pobyt pre CF die\u0165a, spolufinancovanie doplatkov za lieky v lek\u00e1rni, n\u00e1kup membr\u00e1n a in\u00fdch n\u00e1hradn\u00fdch s\u00fa\u010diastok do inhal\u00e1torov).<\/p>\n","protected":false},"excerpt":{"rendered":"

V roku 2011 pokračovalo naše občianske združenie v pravidelných aktivitách, ktorými sú benefičný koncert a sociálne poradenstvo. Najväčší pokrok sme zaznamenali v rozvoji našej webovej stránky, ktorá výrazne zvýšila povedomie o diagnóze cystická fibróza. 25. marca 2011 sme sa zúčastnili … Continued<\/a><\/p>\n","protected":false},"author":3,"featured_media":1600,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[264],"tags":[],"class_list":["post-901","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-priatelia-slanych-deti"],"yoast_head":"\nAktivity Priate\u013eov slan\u00fdch det\u00ed v roku 2011 - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"V roku 2011 pokra\u010dovalo na\u0161e ob\u010dianske zdru\u017eenie v benefi\u010dnom koncerte a soci\u00e1lnom poradenstve. 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