{"id":1619,"date":"2013-05-08T17:10:00","date_gmt":"2013-05-08T16:10:00","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/?p=1619"},"modified":"2017-09-03T13:29:31","modified_gmt":"2017-09-03T12:29:31","slug":"aktivity-priatelov-slanych-deti-v-roku-2012","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/aktivity-priatelov-slanych-deti-v-roku-2012\/1619","title":{"rendered":"Aktivity Priate\u013eov slan\u00fdch det\u00ed v roku 2012"},"content":{"rendered":"

V roku 2012 pokra\u010dovalo na\u0161e ob\u010dianske zdru\u017eenie v aktivit\u00e1ch pomoci slan\u00fdm de\u0165om aj dospel\u00fdm: soci\u00e1lne poradenstvo, \u00fa\u010das\u0165 na konferenci\u00e1ch, projekt Nakresli anjela, rozvoj webu, individu\u00e1lna finan\u010dn\u00e1 a materi\u00e1lna pomoc rodin\u00e1m.<\/p>\n

Soci\u00e1lne poradenstvo sme poskytovali len v mesiacoch janu\u00e1r a febru\u00e1r, nako\u013eko sa skon\u010dila na\u0161a spolupr\u00e1ca s p. Hlav\u00e1\u010dovou.<\/p>\n

29.2.2012 sa konala historicky prv\u00e1 slovensk\u00e1 konferencia o zriedkav\u00fdch chorob\u00e1ch, na ktorej sme sa z\u00fa\u010dastnili. Tento de\u0148 bol z\u00e1rove\u0148 vyhl\u00e1sen\u00fd za de\u0148 zriedkav\u00fdch chor\u00f4b. Odhaduje sa, \u017ee v eur\u00f3pskej \u00fanii \u017eije 27-36 mili\u00f3nov \u013eud\u00ed s t\u00fdmito diagn\u00f3zami. Tieto choroby postihn\u00fa po\u010das \u017eivota 6-8% popul\u00e1cie v eur\u00f3pskej \u00fanii.<\/p>\n

30.a 31.3.2012 sme sa akt\u00edvne z\u00fa\u010dastnili II. celoslovenskej konferencie pacientsk\u00fdch organiz\u00e1ci\u00ed v Pie\u0161\u0165anoch. Na\u0161e ob\u010dianske zdru\u017eenie malo mo\u017enos\u0165 prezent\u00e1cie formou posteru. T\u00e9ma konferencie pre tento rok bola Podoba a funkcia pacientskych organiz\u00e1ci\u00ed v slovenskom zdravotn\u00edctve. Asi najviac sklo\u0148ovanou t\u00e9mou bola kategoriz\u00e1cia liekov, ktorej sa venovali viacer\u00ed predn\u00e1\u0161aj\u00faci. \u010eal\u0161\u00edmi t\u00e9mami bola eduk\u00e1cia pacientov, platby za zdravotn\u00fa starostlivos\u0165, schva\u013eovanie lie\u010dby pacientom v zdravotnej pois\u0165ovni, advok\u00e1cia pacientov.<\/p>\n

Na\u0161e ob\u010dianske zdru\u017eenie sa v roku 2012 stalo \u010dlenom Slovenskej aliancie zriedkav\u00fdch chor\u00f4b, ktor\u00e1 zdru\u017euje 12 pacientsk\u00fdch organiz\u00e1cii. Vo febru\u00e1ri sa konalo prv\u00e9 stretnutie, kde sme si volili org\u00e1ny aliancie.<\/p>\n

V apr\u00edli 2012 sme vyhl\u00e1sili s\u00fa\u0165a\u017e: Nakresli anjela a z\u00edskaj membr\u00e1nu do eFlow rapid. Z\u00fa\u010dastni\u0165 sa mohli deti od 6 do 15 rokov. Podmienkou z\u00edskania membr\u00e1ny bolo nakreslenie obr\u00e1zku s mot\u00edvom anjela vo form\u00e1te A4. Ocenili sme celkovo 5 det\u00ed, ktor\u00e9 z\u00edskali membr\u00e1ny v celkovej sume 369,60 Eur.<\/p>\n

Pokra\u010dovali sme akt\u00edvne s rozvojom na\u0161ej web str\u00e1nky slanedeti.sk. Zverejnili sme celkovo 35 popul\u00e1rnych aj odborn\u00fdch \u010dl\u00e1nkov.<\/p>\n

V roku 2012 sme z\u00edskali 3300,62 Eur z asign\u00e1cii 2% z dan\u00ed a podarilo sa n\u00e1m z\u00edska\u0165 fina\u010dn\u00fd dar v hodnote 400 Eur od firmy GSK.<\/p>\n

Z t\u00fdchto prostriedkov sme poskytli finan\u010dn\u00fa pomoc 20 pacientom s cystickou fibr\u00f3zou (ozdravn\u00e9 a rehabilita\u010dn\u00e9 pobyty spolufinancovanie doplatkov za lieky v lek\u00e1rni, n\u00e1kup membr\u00e1n a in\u00fdch n\u00e1hradn\u00fdch s\u00fa\u010diastok do inhal\u00e1torov), prispeli sme na Pulzn\u00fd oximeter do Univerzitnej nemocnice v Bratislave-Ru\u017einove a rozdali sme membr\u00e1ny do inhal\u00e1tora e-flow rapid 5 de\u0165om zo s\u00fa\u0165a\u017ee Nakresli anjela. Celkovo sme rozdelili 3667,72 Eur.<\/p>\n

Pr\u00edjmy a v\u00fddavky v roku 2012<\/h4>\n

Pr\u00edjmy<\/strong><\/h5>\n

Dary a pr\u00edspevky: 400,00 \u20ac
\nKreditn\u00fd \u00farok na BU: 0,69 \u20ac
\nIn\u00fd pr\u00edjem: 363,00 \u20ac
\nPrijat\u00e9 2% z dan\u00ed: 3 300,62 \u20ac<\/p>\n

Pr\u00edjmy spolu: 4 064,31 \u20ac<\/strong><\/p>\n

 <\/p>\n

V\u00fddavky<\/strong><\/h5>\n

Prev\u00e1dzkov\u00e1 r\u00e9\u017eia: 936,58 \u20ac
\nPoplatky na BU: 65,00 \u20ac
\nDa\u0148 z \u00farokov: 0,07 \u20ac
\nFinan\u010dn\u00e9 pomoci: 3 667,72 \u20ac<\/p>\n

V\u00fddavky spolu: 4 669,37 \u20ac<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

V roku 2012 pokračovalo naše občianske združenie v aktivitách pomoci slaným deťom aj dospelým: sociálne poradenstvo, účasť na konferenciách, projekt Nakresli anjela, rozvoj webu, individuálna finančná a materiálna pomoc rodinám. Sociálne poradenstvo sme poskytovali len v mesiacoch január a február, … 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-1619","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 2012 - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"Preh\u013ead aktiv\u00edt v roku 2012.\" \/>\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\/aktivity-priatelov-slanych-deti-v-roku-2012\/1619\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Aktivity Priate\u013eov slan\u00fdch det\u00ed v roku 2012 - 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