{"id":3476,"date":"2023-05-23T11:28:33","date_gmt":"2023-05-23T09:28:33","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=3476"},"modified":"2023-05-23T11:28:35","modified_gmt":"2023-05-23T09:28:35","slug":"hereditarni-angioedem-hrvatska-izborna-skupstina","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/hereditarni-angioedem-hrvatska-izborna-skupstina\/","title":{"rendered":"Hereditarni angioedem Hrvatska- izborna skup\u0161tina"},"content":{"rendered":"<p>13.5.2023 u Tuheljskim Toplica odr\u017eana je izborna skup\u0161tina na kojoj je izabran upravni odbor. Mihaela \u0160ogori\u0107 izabrana je na jo\u0161 jedan mandat za predsjednika, Ante \u010cobanov za dopredsjednika\u00a0a Sa\u0161a Pavli\u0107 za tajnika udruge.<\/p>\n\n\n\n<div style=\"height:49px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"461\" data-id=\"3484\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230513_203558-1024x461.jpg\" alt=\"\" class=\"wp-image-3484\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230513_203558-1024x461.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230513_203558-300x135.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230513_203558-768x346.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230513_203558-1536x692.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230513_203558-2048x922.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"461\" data-id=\"3485\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_201449-1024x461.jpg\" alt=\"\" class=\"wp-image-3485\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_201449-1024x461.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_201449-300x135.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_201449-768x346.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_201449-1536x692.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_201449-2048x922.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"461\" data-id=\"3482\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_211157-1024x461.jpg\" alt=\"\" class=\"wp-image-3482\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_211157-1024x461.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_211157-300x135.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_211157-768x346.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_211157-1536x692.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/20230516_211157-2048x922.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" 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src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/IMG-3738e9946570bf6ffe1b2c0480e2036d-V-1024x768.jpg\" alt=\"\" class=\"wp-image-3477\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/IMG-3738e9946570bf6ffe1b2c0480e2036d-V-1024x768.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/IMG-3738e9946570bf6ffe1b2c0480e2036d-V-300x225.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/IMG-3738e9946570bf6ffe1b2c0480e2036d-V-768x576.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/IMG-3738e9946570bf6ffe1b2c0480e2036d-V-1536x1152.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/IMG-3738e9946570bf6ffe1b2c0480e2036d-V.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"1024\" data-id=\"3480\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_159671340407709-768x1024.jpeg\" alt=\"\" class=\"wp-image-3480\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_159671340407709-768x1024.jpeg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_159671340407709-225x300.jpeg 225w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_159671340407709-1152x1536.jpeg 1152w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_159671340407709.jpeg 1536w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"3479\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_179086541757364-1024x768.jpeg\" alt=\"\" class=\"wp-image-3479\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_179086541757364-1024x768.jpeg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_179086541757364-300x225.jpeg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_179086541757364-768x576.jpeg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_179086541757364-1536x1152.jpeg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_179086541757364.jpeg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"3481\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_770443338119344-1024x768.jpeg\" alt=\"\" class=\"wp-image-3481\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_770443338119344-1024x768.jpeg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_770443338119344-300x225.jpeg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_770443338119344-768x576.jpeg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_770443338119344-1536x1152.jpeg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_770443338119344.jpeg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"1024\" data-id=\"3478\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_1414492906000147-768x1024.jpeg\" alt=\"\" class=\"wp-image-3478\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_1414492906000147-768x1024.jpeg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_1414492906000147-225x300.jpeg 225w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_1414492906000147-1152x1536.jpeg 1152w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/05\/received_1414492906000147.jpeg 1536w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/figure>\n<\/figure>\n\n\n\n<div style=\"height:52px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Nakon skup\u0161tine lije\u010dnici koji se bave&nbsp; HAE-om uprili\u010dili su predavanja&nbsp;za&nbsp; nas oboljele i \u010dlanove na\u0161ih obitelji.<\/p>\n\n\n\n<p>-Prof Jasminka&nbsp;Milas Ahi\u0107- KBC Osijek -Genetika HAE<\/p>\n\n\n\n<p>-Prim Marko Bare\u0161i\u0107 -KBC-Zagreb- Kratkoro\u010dna i dugoro\u010dna profilaksa HAE<\/p>\n\n\n\n<p>-Dr Boris Karanovi\u0107 &#8211; KBC Zagreb- Trudno\u0107a i HAE<\/p>\n\n\n\n<p>-Dr Marin Petri\u0107 &#8211; KBC Split- Komunikacija pacijenta i lije\u010dnika HAE<\/p>\n\n\n\n<p>-Prim Ljerka \u010culav -OB \u0160ibenik- Nadolaze\u0107i lijekovi za lije\u010denje&nbsp;HAE<\/p>\n\n\n\n<p>-Mag.med.tehcn&nbsp;Jelena Vuki\u0107- OB \u0161ibenik- Edukacija o samoprimjeni lijeka<\/p>\n\n\n\n<p>Nakon predavanja uprava Tuheljskih toplica u znak podr\u0161ke i u susret me\u0111unarodnom danu oboljelih koji se obilje\u017eava 16.5 osvijetlila je dvorac Mihanovi\u0107 u ljubi\u010dastu boju koja je boja ove bolesti. Na tome im se jako zahvaljujemo.<\/p>\n\n\n\n<p>Susret je nastavljen i u nedjelju 13.5.2023 godine&nbsp;sa psiholo\u0161kom radionicom&nbsp;<a href=\"http:\/\/dr.sc\/\" target=\"_blank\" rel=\"noreferrer noopener\">dr.sc<\/a>. Maje Batista- KBC Sestre Milosrdnice<\/p>\n\n\n\n<p>Na radionici su sudjelovali svi oboljeli, \u010dlanovi obitelji i sve med.sestre koje su se pridru\u017eile susretu.<\/p>\n\n\n\n<p>Na sami me\u0111unarodni HAE dan 16.5.2023 godine grad Osijek je oboljelima pru\u017eio podr\u0161ku i osvijetlio&nbsp;Osje\u010dki Pje\u0161a\u010dki most u ljubi\u010dasto. U 20h kod mosta okupila se nekolicina gra\u0111ana, oboljelih, med.sestara i lije\u010dnika iz KBC Osijek.&nbsp;<\/p>\n\n\n\n<p>doga\u0111aj je bio i medijski popra\u0107en.<\/p>\n\n\n\n<p>Zahvaljujemo se svima koji se svojim anga\u017emanom trude javnosti pribli\u017eiti ovu rijetku bolest i koji su uvijek uz nas u na\u0161oj maloj HAE zajednici.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Pje\u0161a\u010dki most u ljubi\u010dastoj boji kao podr\u0161ka oboljelima od hereditarnog angioedema\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/G_s_Bm05Doo?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>Sam doga\u0111aju popratili su i mediji: <\/p>\n\n\n\n<p><a href=\"https:\/\/www.24sata.hr\/lifestyle\/mihaela-iz-okolice-dakova-zbog-rijetke-bolesti-dijagnozu-sam-dobila-nakon-17-godina-910627 \">https:\/\/www.24sata.hr\/lifestyle\/mihaela-iz-okolice-dakova-zbog-rijetke-bolesti-dijagnozu-sam-dobila-nakon-17-godina-910627 <\/a><\/p>\n\n\n\n<p><a href=\"https:\/\/www.zagreb.info\/aktualno\/izgledamo-kao-da-nas-je-netko-pretukao-ispovijest-zene-koja-boluje-od-rijetke-bolesti-terapija-je-zastarjela-i-grozna\/516655\/\">https:\/\/www.24sata.hr\/lifestyle\/mihaela-iz-okolice-dakova-zbog-rijetke-bolesti-dijagnozu-sam-dobila-nakon-17-godina-910627<\/a> <\/p>\n\n\n\n<p><a href=\"https:\/\/www.linkedin.com\/posts\/terme-tuhelj_haeawarenessday-mice-congress-activity-7064489751847870466-1BtE?utm_source=share&amp;utm_medium=member_android\">https:\/\/www.linkedin.com\/posts\/terme-tuhelj_haeawarenessday-mice-congress-activity-7064489751847870466-1BtE?utm_source=share&amp;utm_medium=member_android<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>13.5.2023 u Tuheljskim Toplica odr\u017eana je izborna skup\u0161tina na kojoj je izabran upravni odbor. Mihaela \u0160ogori\u0107 izabrana je na jo\u0161 jedan mandat za predsjednika, Ante \u010cobanov za dopredsjednika\u00a0a Sa\u0161a Pavli\u0107 za tajnika udruge. Nakon skup\u0161tine lije\u010dnici koji se bave&nbsp; HAE-om uprili\u010dili su predavanja&nbsp;za&nbsp; nas oboljele&#8230;<\/p>","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-3476","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Hereditarni angioedem Hrvatska- izborna skup\u0161tina - Hrvatski savez za rijetke bolesti<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/rijetke-bolesti.com\/en\/hereditarni-angioedem-hrvatska-izborna-skupstina\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Hereditarni angioedem Hrvatska- izborna skup\u0161tina - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"13.5.2023 u Tuheljskim Toplica odr\u017eana je izborna skup\u0161tina na kojoj je izabran upravni odbor. Mihaela \u0160ogori\u0107 izabrana je na jo\u0161 jedan mandat za predsjednika, Ante \u010cobanov za dopredsjednika\u00a0a Sa\u0161a Pavli\u0107 za tajnika udruge. 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