{"id":4138,"date":"2025-01-09T11:51:56","date_gmt":"2025-01-09T09:51:56","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=4138"},"modified":"2025-01-15T11:05:09","modified_gmt":"2025-01-15T09:05:09","slug":"savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-godisnji-izvjestaj-o-upitima","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/savjetovaliste-za-rijetke-bolesti-sustav-sveobuhvatne-podrske-godisnji-izvjestaj-o-upitima\/","title":{"rendered":"Rare Disease Counseling Center \u2013 Comprehensive Support System\nAnnual Inquiry Report for 2024"},"content":{"rendered":"<p>The Rare Disease Counseling Service (Croatian Helpline for Rare Diseases) was launched in 2011 and operates across the entire territory of Croatia. Inquiries received through the helpline are handled by the Alliance\u2019s expert team: a social worker, a psychologist, and an external volunteer medical team.<\/p>\n\n\n\n<p>Between January 1, 2024, and December 31, 2024, the Croatian Helpline for Rare Diseases received 1,871 calls, comprising a total of 2,384 inquiries from people living with rare diseases and their family members.<\/p>\n\n\n\n<p>There were 642 inquiries (27%) related to rights (within the social, health, pension, and other systems).\n\nA total of 88 documents (4%) were prepared, including complaints, requests, confirmations, and donation letters.\n\n271 inquiries (11%) were related to individual or group psychological counseling\u2014delivered in person, by phone, or online.\n\nThe occupational therapy counseling service operated during March, April, and May, receiving 62 calls (3%) during that period.\n\nThe \u201cOther\u201d category included 402 inquiries (17%), such as news updates, the \"Little Wish, Big Happiness\" project, and other uncategorized questions.\n\n243 inquiries (10%) were of a medical nature\u2014concerning disease information, treatment options, and available therapies.\n\n128 inquiries (5%) were related to membership.\n\n246 inquiries (10%) were about connecting with others living with the same rare disease.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"724\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/01\/GODISNJI-IZVJESTAJ-O-UPITIMA-1-1024x724.jpg\" alt=\"\" class=\"wp-image-4139\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/01\/GODISNJI-IZVJESTAJ-O-UPITIMA-1-1024x724.jpg 1024w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/01\/GODISNJI-IZVJESTAJ-O-UPITIMA-1-300x212.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/01\/GODISNJI-IZVJESTAJ-O-UPITIMA-1-768x543.jpg 768w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/01\/GODISNJI-IZVJESTAJ-O-UPITIMA-1-1536x1086.jpg 1536w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/01\/GODISNJI-IZVJESTAJ-O-UPITIMA-1-2048x1448.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\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<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-1.png\" alt=\"\" class=\"wp-image-4044\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og-1.png 251w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2024\/09\/grb-zg-og-1-244x300.png 244w\" sizes=\"auto, (max-width: 251px) 100vw, 251px\" \/><\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>The Rare Disease Counseling Service (Croatian Helpline for Rare Diseases) was launched in 2011 and operates across the entire territory of Croatia. Inquiries received through the helpline are handled by the Alliance\u2019s expert team: a social worker, a psychologist, and an external volunteer medical team.<\/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-4138","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 \u2013 Godi\u0161nji izvje\u0161taj o upitima - 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-godisnji-izvjestaj-o-upitima\/\" \/>\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 \u2013 Godi\u0161nji izvje\u0161taj o upitima - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Savjetovali\u0161te za rijetke bolesti (Hrvatska linija pomo\u0107i za rijetke bolesti) pokrenuta je 2011. godine i djeluje na podru\u010dju cijele Hrvatske. Na upite zaprimljene preko linije odgovara stru\u010dni tim Saveza: socijalna radnica, psihologinja i vanjski volonterski medicinski tim. 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