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 \u201cslan\u00e9 deti\u201c.<\/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 materi\u00e1lneho, finan\u010dn\u00e9ho charakteru, m\u00e1 formu telefonick\u00fdch konzult\u00e1cii a osobn\u00fdch stretnut\u00ed, 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 u\u017eivate\u013esk\u00e9 f\u00f3rum, kan\u00e1l na youtube, str\u00e1nku na facebooku a twitteri.<\/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 troj\u010dlenn\u00e1 spr\u00e1vna rada. Pri na\u0161ej pr\u00e1ci n\u00e1m pom\u00e1ha viacero dobrovo\u013en\u00edkov.<\/p>\n
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
Friends of Salty Children is non-profit organization founded in 2005 based in Slovakia. Our goal is to help people suffering from cystic fibrosis (CF). Cystic fibrosis is rare, genetic, untreatable disease. It is associated with impaired chloride metabolism with serious consequences in the organism. One sign of the disease is excessively salty sweat and that is where \u201csalty children\u201c term is derived from.<\/p>\n
Treatment is costly and demanding for both patients and their families and brings psychological burden as well. Our organization aims to relieve these disease consequences. We provide help to all CF patients in Slovakia who asks for. Means of our help are financial, material, consultancy and meetings, providing information by our website. Since our foundation we organize annual charity concert \u201cSlane Mosty\u201c (\u201cSalty Bridges\u201c). The funds raised by the concert are donated to the patients. We also raise funds from sponsors and tax assignation. We run website www.slanedeti.sk that provides information on CF to the patients, health care professionals and general public. The website is associated with some additional information services such as users forum, youtube channel, facebook and twitter pages. We also provide information to public by information leaflets and direct contact at non-profit fairs.<\/p>\n
We communicate and advocate patients at meetings with relevant parties such as state authorities, health insurers. We cooperate with hospital CF centers, physicians, physiotherapists and other health care professionals involved. We maintain contacts with other patient organizations in Slovakia and abroad. Since 2012 we are member of Slovak Rare Disease Alliance.<\/p>\n
Our scope covers all territory of Slovakia. The organization is managed by three member administrative council. We have also some volunteers who help us with our activities. We do not build a membership base but we welcome everyone who wish to help us by volunteering.<\/p>\n","protected":false},"excerpt":{"rendered":"