{"id":20066,"date":"2015-02-23T11:29:28","date_gmt":"2015-02-23T10:29:28","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=20066"},"modified":"2015-02-23T11:41:30","modified_gmt":"2015-02-23T10:41:30","slug":"28-unor-den-vzacnych-nemoci-a-metodej","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=20066","title":{"rendered":"28. \u00fanor: Den vz\u00e1cn\u00fdch nemoc\u00ed a Metod\u011bj"},"content":{"rendered":"<p><strong>V sobotu 28.2 2015 si lid\u00e9 na cel\u00e9m sv\u011bt\u011b p\u0159ipomenou problematiku nemoc\u00ed, kter\u00e9 se v populaci vyskytuj\u00ed velmi z\u0159\u00eddka a kter\u00e9 jsou v\u00fdjime\u010dn\u00e9 i sv\u00fdmi projevy. Na posledn\u00ed \u00fanorov\u00fd den toti\u017e p\u0159ipad\u00e1 Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed \u2013 Rare Disease Day.<\/strong> <!--more--><\/p>\n<p>Havl\u00ed\u010dk\u016fv Brod \u2013 Vz\u00e1cn\u00e1 onemocn\u011bn\u00ed jsou definov\u00e1na jako \u017eivot ohro\u017euj\u00edc\u00ed nebo z\u00e1va\u017en\u00e1 chronick\u00e1 onemocn\u011bn\u00ed, jejich\u017e v\u00fdskyt v populaci je men\u0161\u00ed ne\u017e u 1 osoby z 2000. V sou\u010dasnosti je zn\u00e1mo kolem 8 000 druh\u016f takov\u00fdch nemoc\u00ed, n\u011bkterou z nich trp\u00ed jenom ve st\u00e1tech Evropsk\u00e9 unie p\u0159ibli\u017en\u011b 6-8% obyvatelstva, co\u017e je kolem 30 milion\u016f osob.<br \/>\nTato onemocn\u011bn\u00ed jsou v\u011bt\u0161inou d\u011bdi\u010dn\u00e1, prvn\u00ed projevy se nej\u010dast\u011bji objevuj\u00ed ji\u017e v d\u011btstv\u00ed a zhruba 30% pacient\u016f zem\u0159e do p\u011bti let v\u011bku. V\u00edce ne\u017e polovina nemocn\u00fdch je bezprost\u0159edn\u011b ohro\u017eena na \u017eivot\u011b \u010di trvale invalidn\u00ed.<\/p>\n<p>Naprost\u00e1 v\u011bt\u0161ina vz\u00e1cn\u00fdch nemoc\u00ed je nevyl\u00e9\u010diteln\u00e1, c\u00edlem terapie b\u00fdv\u00e1 zlep\u0161en\u00ed kvality \u017eivota posti\u017een\u00e9ho \u010dlov\u011bka prost\u0159ednictv\u00edm speci\u00e1ln\u00edch l\u00e9k\u016f (orphan drugs), kter\u00e9 v\u0161ak b\u00fdvaj\u00ed nesm\u00edrn\u011b n\u00e1kladn\u00e9. D\u016fle\u017eit\u00e1 je tak\u00e9 v\u010dasn\u00e1 diagnostika a informovanost pacienta, kterou zna\u010dn\u011b komplikuje velk\u00e1 rozmanitost vz\u00e1cn\u00fdch onemocn\u011bn\u00ed a nedostate\u010dn\u00e9 mno\u017estv\u00ed informac\u00ed.<\/p>\n<p>Tam, kde l\u00e9\u010dba nen\u00ed mo\u017en\u00e1, je snaha \u0159e\u0161it alespo\u0148 symptomy, l\u00e9\u010dit p\u0159idru\u017een\u00e9 komplikace a umo\u017enit genetick\u00e9 poradenstv\u00ed a prenat\u00e1ln\u00ed diagnostiku v rodin\u011b.<\/p>\n<p>Den vz\u00e1cn\u00fdch nemoc\u00ed organizuje spole\u010dnost EURORDIS ji\u017e osm\u00fdm rokem a zahrnuje aktivity stovek pacientsk\u00fdch organizac\u00ed ze zhruba 80 st\u00e1t\u016f po cel\u00e9m sv\u011bt\u011b, letos se sloganem Den za dnem, ruku v ruce.<\/p>\n<p>METOD\u011aJ \u2013 MEZI TOLIKA D\u011aTMI JEDIN\u00dd je organizac\u00ed, kter\u00e1 od roku 2009 pom\u00e1h\u00e1 rodin\u00e1m d\u011bt\u00ed se vz\u00e1cn\u00fdm, zejm\u00e9na metabolick\u00fdm, onemocn\u011bn\u00edm. S\u00eddl\u00ed v Havl\u00ed\u010dkov\u011b Brod\u011b, ale sdru\u017euje rodiny nevyl\u00e9\u010diteln\u011b nemocn\u00fdch d\u011bt\u00ed z cel\u00e9 republiky. Spolek \u00fazce spolupracuje s metabolickou jednotkou Kliniky d\u011btsk\u00e9ho a dorostov\u00e9ho l\u00e9ka\u0159stv\u00ed VFN a 1. LF UK v Praze a ambulanc\u00ed \u00dastavu d\u011bdi\u010dn\u00fdch metabolick\u00fdch poruch a po\u0159\u00e1d\u00e1 akce zam\u011b\u0159en\u00e9 na podporu konkr\u00e9tn\u00edch pacient\u016f \u010di instituc\u00ed, kter\u00e9 se na pomoc &#8222;vz\u00e1cn\u00fdm&#8220; d\u011btem zam\u011b\u0159uj\u00ed.<\/p>\n<p>Mezi pravideln\u00e9 aktivity spolku pat\u0159\u00ed po\u0159\u00e1d\u00e1n\u00ed charitativn\u00edho bazaru ve spolupr\u00e1ci s mate\u0159sk\u00fdm centrem Zvone\u010dek v Havl\u00ed\u010dkov\u011b Brod\u011b, mikul\u00e1\u0161sk\u00e9 bes\u00eddky spojen\u00e9 s aukc\u00ed rukod\u011bln\u00fdch v\u00fdrobk\u016f, v\u00edkendov\u00e9ho setk\u00e1n\u00ed rodin nebo vyd\u00e1v\u00e1n\u00ed kalend\u00e1\u0159e. V\u00fdznamnou finan\u010dn\u00ed podporou jsou sponzorsk\u00e9 dary a v\u00fdt\u011b\u017eky z akc\u00ed organizovan\u00fdch dobrovoln\u00edky, kter\u00fdm nen\u00ed lhostejn\u00fd osud nemocn\u00fdch d\u011bt\u00ed. Takovou akc\u00ed je nap\u0159\u00edklad charitativn\u00ed multi\u017e\u00e1nrov\u00fd festival Houpa\u010dka po\u0159\u00e1dan\u00fd sdru\u017een\u00edm 2\/4 v jiho\u010desk\u00e9m Vele\u0161\u00edn\u011b, kter\u00fd je z\u00e1\u0159n\u00fdm p\u0159\u00edkladem toho, \u017ee nezi\u0161tn\u00e1 pomoc bli\u017en\u00edmu by nem\u011bla zn\u00e1t hranic.<\/p>\n<p>Svoji podporu pacient\u016fm se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm a metod\u011bjsk\u00fdm d\u011btem m\u016f\u017eete vyj\u00e1d\u0159it zasl\u00e1n\u00edm va\u0161\u00ed fotografie v symbolick\u00e9m gestu zdvi\u017een\u00fdch rukou (Raise and join hands) na emailovou adresu info@metodej.cz nebo na facebookov\u00fd profil: Metod\u011bj \u2013 MEZI TOLIKA D\u011aTMI JEDIN\u00dd.<\/p>\n<p>Havl\u00ed\u010dkobrodsk\u00fd den\u00edk<br \/>\n<a href=\"http:\/\/havlickobrodsky.denik.cz\/\">http:\/\/havlickobrodsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>V sobotu 28.2 2015 si lid\u00e9 na cel\u00e9m sv\u011bt\u011b p\u0159ipomenou problematiku nemoc\u00ed, kter\u00e9 se v populaci vyskytuj\u00ed velmi z\u0159\u00eddka a kter\u00e9 jsou v\u00fdjime\u010dn\u00e9 i sv\u00fdmi <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=20066\" title=\"28. \u00fanor: Den vz\u00e1cn\u00fdch nemoc\u00ed a Metod\u011bj\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":19818,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-20066","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/20066","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=20066"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/20066\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/19818"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=20066"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=20066"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=20066"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}