{"id":4099,"date":"2024-11-27T11:31:15","date_gmt":"2024-11-27T09:31:15","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=4099"},"modified":"2024-11-29T11:43:40","modified_gmt":"2024-11-29T09:43:40","slug":"savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/","title":{"rendered":"Counseling Center for Rare Diseases \u2013 System of Comprehensive Support \u2013 Membership and Networking Among Patients with the Same Diagnosis"},"content":{"rendered":"<p><\/p>\n\n\n\n<p>Rijetke bolesti \u010desto donose izazove u svakodnevnom \u017eivotu, kako u pogledu dijagnoze i lije\u010denja, ostvarivanju prava, tako i u socijalnom okru\u017eenju. Stoga \u017eelimo osigurati mogu\u0107nost oboljelima da se pove\u017eu s drugima koji imaju istu dijagnozu te im tako dati priliku da razmijene iskustva, informacije, savjete i pru\u017ee podr\u0161ku jedni drugima.<\/p>\n\n\n\n<p>Sve je to mogu\u0107e u\u010dlanjenjem u Savez. \u010clanstvo je besplatno te je trenuta\u010dno u bazu Saveza za rijetke bolesti upisano oko 1200 \u010dlanova.<\/p>\n\n\n\n<p>&nbsp;Na\u0161a misija je povezati oboljele od istih dijagnoza, stvaraju\u0107i sna\u017enu mre\u017eu potpore i zajedni\u0161tva, kako bi svaki pojedinac imao pristup potrebnoj podr\u0161ci, informacijama i resursima. To \u010dinimo i suradnjom s udrugama za rijetke bolesti diljem regije i \u0161ire.<\/p>\n\n\n\n<p>Za \u010dlanstvo je dovoljno ispuniti upitnik  te ga poslati na mail: <a href=\"mailto:rijetke.bolesti@gmail.com\">rijetke.bolesti@gmail.com<\/a><\/p>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-cf4eb80e-78e5-40d9-9bcf-2d3b611e7ffc\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/11\/BAZA-RIJETKIH-BOLESTI-UPITNIK-ODRASLI-2.docx\">BAZA-RIJETKIH-BOLESTI-UPITNIK &#8211; ODRASLI<\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/11\/BAZA-RIJETKIH-BOLESTI-UPITNIK-ODRASLI-2.docx\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-cf4eb80e-78e5-40d9-9bcf-2d3b611e7ffc\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-1f4badec-5965-4904-8b4f-25f475bcd446\" href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/11\/BAZA-RIJETKIH-BOLESTI-UPITNIK-DIJETE.docx\">BAZA-RIJETKIH-BOLESTI-UPITNIK &#8211; DIJETE<\/a><a href=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/11\/BAZA-RIJETKIH-BOLESTI-UPITNIK-DIJETE.docx\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-1f4badec-5965-4904-8b4f-25f475bcd446\">Download<\/a><\/div>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>\u0160to nudimo?<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Povezivanje s oboljelima koje imaju istu dijagnozu<\/strong>: Kroz na\u0161u mre\u017eu mo\u017eete se povezati s drugim oboljelima iz Hrvatske i inozemstva, te razmjenjivati informacije, savjete i iskustva.<\/li>\n\n\n\n<li><strong>Besplatno \u010dlanstvo<\/strong>: \u010clanstvo u Hrvatskom savezu za rijetke bolesti je besplatno.<\/li>\n\n\n\n<li><strong>Podr\u0161ka i informiranje<\/strong>: Kao \u010dlan, bit \u0107ete redovito informirani o novostima u svijetu rijetkih bolesti, novim istra\u017eivanjima, terapijama, te pravima koja imate kao pacijent.<\/li>\n<\/ul>\n\n\n\n<p><\/p>\n\n\n\n<p>The program is co-financed by the City of Zagreb, through the Office for Social Protection, Health, Veterans, and Persons with Disabilities.<\/p>\n\n\n\n<p><\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"251\" height=\"308\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og.png\" alt=\"\" class=\"wp-image-4041\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og.png 251w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og-244x300.png 244w\" sizes=\"auto, (max-width: 251px) 100vw, 251px\" \/><\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Rare diseases often bring challenges in everyday life\u2014not only regarding diagnosis and treatment or securing rights but also within the social environment. Therefore, we aim to provide patients the opportunity to connect with others who share the same diagnosis, giving them a chance to exchange experiences, information, and advice\u2026<\/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-4099","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>Savjetovali\u0161te za rijetke bolesti \u2013 sustav sveobuhvatne podr\u0161ke - \u010clanstvo i me\u0111usobno povezivanje oboljelih od iste dijagnoze - 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\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Savjetovali\u0161te za rijetke bolesti \u2013 sustav sveobuhvatne podr\u0161ke - \u010clanstvo i me\u0111usobno povezivanje oboljelih od iste dijagnoze - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Rijetke bolesti \u010desto donose izazove u svakodnevnom \u017eivotu, kako u pogledu dijagnoze i lije\u010denja, ostvarivanju prava, tako i u socijalnom okru\u017eenju. Stoga \u017eelimo osigurati mogu\u0107nost oboljelima da se pove\u017eu s drugima koji imaju istu dijagnozu te im tako dati priliku da razmijene iskustva, informacije, savjete...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2024-11-27T09:31:15+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-11-29T09:43:40+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og.png\" \/>\n<meta name=\"author\" content=\"sara\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"sara\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/\",\"name\":\"Savjetovali\u0161te za rijetke bolesti \u2013 sustav sveobuhvatne podr\u0161ke - \u010clanstvo i me\u0111usobno povezivanje oboljelih od iste dijagnoze - Hrvatski savez za rijetke bolesti\",\"isPartOf\":{\"@id\":\"https:\/\/rijetke-bolesti.com\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og.png\",\"datePublished\":\"2024-11-27T09:31:15+00:00\",\"dateModified\":\"2024-11-29T09:43:40+00:00\",\"author\":{\"@id\":\"https:\/\/rijetke-bolesti.com\/#\/schema\/person\/aef3ba29d85f7c9772a22dda632784e7\"},\"breadcrumb\":{\"@id\":\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/#breadcrumb\"},\"inLanguage\":\"en-GB\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-GB\",\"@id\":\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/#primaryimage\",\"url\":\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og.png\",\"contentUrl\":\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og.png\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/rijetke-bolesti.com\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-2\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/rijetke-bolesti.com\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Savjetovali\u0161te za rijetke bolesti \u2013 sustav sveobuhvatne podr\u0161ke &#8211; 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