{"id":4458,"date":"2021-02-28T08:12:00","date_gmt":"2021-02-28T07:12:00","guid":{"rendered":"https:\/\/www.udrugamrkz.hr\/?p=4458"},"modified":"2021-03-03T08:17:00","modified_gmt":"2021-03-03T07:17:00","slug":"medunarodni-dan-rijetkih-bolesti","status":"publish","type":"post","link":"https:\/\/www.udrugamrkz.hr\/?p=4458","title":{"rendered":"Me\u0111unarodni dan rijetkih bolesti"},"content":{"rendered":"\n<p>Me\u0111unarodni dan rijetkih bolesti obilje\u017eava se 28. velja\u010de pa smo tim povodom odr\u017eali radionicu s na\u0161im Masla\u010dcima o rijetkim bolestima kako bi ih senzibilizirali i upoznali s te\u0161ko\u0107ama s kojima se susre\u0107u oboljeli. Ve\u0107ina rijetkih bolesti su geneti\u010dke ili priro\u0111ene, no me\u0111u njih se ubrajaju i rijetke infekcije, alergijske\/autoimune bolesti, otrovanja i degenerativni poreme\u0107aji. Rijetke bolesti skupina su razli\u010ditih oboljenja kojima je osnovno zajedni\u010dko obilje\u017eje niska prevalencija. U Europi od rijetkih bolesti boluje oko 6 do 8 posto cjelokupne populacije. U Hrvatskoj je zabilje\u017eeno oko 3120 osoba s rijetkim bolestima, koje ostvaruju neka invalidska prava, te je prevalencija oko 5 na 10.000 stanovnika. Prema podacima znanstvene i stru\u010dne literature evidentirano je izme\u0111u pet i sedam tisu\u0107a vrsta rijetkih bolesti pri \u010demu je pra\u0107enje epidemiologije o ovoj skupini bolesti posebno ote\u017eano i zbog nepostojanja to\u010dnih \u0161ifri prema Me\u0111unarodnoj klasifikaciji bolesti. Za pojedine, \u010de\u0161\u0107e dijagnoze postoje udruge pacijenata, ali mnoge dijagnoze nemaju svoje udruge radi vrlo malog broja oboljelih. Naime, unutar same grupe rijetkih bolesti, postoje i one koje su \u201cvrlo rijetke\u201d te poga\u0111aju jednu osobu na 100.000 stanovnika ili \u010dak i manje. Takvi pacijenti su posebno izolirani i ranjivi. Rijetke bolesti zahva\u0107aju ve\u0107i broj organa. Dob u kojoj se javljaju je razli\u010dita, a u oko polovice su prvi simptomi prisutni ve\u0107 u djetinjstvu.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/www.udrugamrkz.hr\/wp-content\/uploads\/155577343_3468704103241636_7691852836570180017_n.jpg\" alt=\"\" class=\"wp-image-4459\" width=\"566\" height=\"425\" srcset=\"https:\/\/www.udrugamrkz.hr\/wp-content\/uploads\/155577343_3468704103241636_7691852836570180017_n.jpg 960w, https:\/\/www.udrugamrkz.hr\/wp-content\/uploads\/155577343_3468704103241636_7691852836570180017_n-300x225.jpg 300w, https:\/\/www.udrugamrkz.hr\/wp-content\/uploads\/155577343_3468704103241636_7691852836570180017_n-768x576.jpg 768w\" sizes=\"(max-width: 566px) 100vw, 566px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/www.udrugamrkz.hr\/wp-content\/uploads\/155827559_3468703953241651_3646616842462318618_n.jpg\" alt=\"\" class=\"wp-image-4460\" width=\"565\" height=\"390\" srcset=\"https:\/\/www.udrugamrkz.hr\/wp-content\/uploads\/155827559_3468703953241651_3646616842462318618_n.jpg 760w, https:\/\/www.udrugamrkz.hr\/wp-content\/uploads\/155827559_3468703953241651_3646616842462318618_n-300x207.jpg 300w\" sizes=\"(max-width: 565px) 100vw, 565px\" \/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Me\u0111unarodni dan rijetkih bolesti obilje\u017eava se 28. velja\u010de pa smo tim povodom odr\u017eali radionicu s na\u0161im Masla\u010dcima o rijetkim bolestima kako bi ih senzibilizirali i upoznali s te\u0161ko\u0107ama s kojima se susre\u0107u oboljeli. Ve\u0107ina&#46;&#46;&#46;<\/p>\n","protected":false},"author":1,"featured_media":4460,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[1],"tags":[],"_links":{"self":[{"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=\/wp\/v2\/posts\/4458"}],"collection":[{"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=4458"}],"version-history":[{"count":1,"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=\/wp\/v2\/posts\/4458\/revisions"}],"predecessor-version":[{"id":4461,"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=\/wp\/v2\/posts\/4458\/revisions\/4461"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=\/wp\/v2\/media\/4460"}],"wp:attachment":[{"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=4458"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=4458"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.udrugamrkz.hr\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=4458"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}