{"id":5789,"date":"2025-10-25T12:17:36","date_gmt":"2025-10-25T10:17:36","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=5789"},"modified":"2025-10-27T12:18:22","modified_gmt":"2025-10-27T10:18:22","slug":"medunarodni-tjedan-svjesnosti-o-buloznoj-epidermolizi","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/medunarodni-tjedan-svjesnosti-o-buloznoj-epidermolizi\/","title":{"rendered":"International Epidermolysis Bullosa Awareness Week"},"content":{"rendered":"<p>October 25 marks Epidermolysis Bullosa (EB) Day, which also launches International Epidermolysis Bullosa Awareness Week (October 25\u201331, 2025).<\/p>\n\n\n\n<p>Epidermolysis bullosa is a very rare and severe genetic condition that causes extreme fragility of the skin and mucous membranes. Those affected are often referred to as \u201cbutterfly children\u201d because even the gentlest touch can cause painful wounds resembling burns. Everyday activities such as dressing, eating, or walking can be a source of pain, and the disease often leads to serious complications and frequent hospitalizations. Most people living with EB develop disabilities at an early age \u2014 and sadly, there is still no cure.<\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"512\" height=\"640\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/568343727_1283969350432523_849750896067016564_n.jpg\" alt=\"\" class=\"wp-image-5791\" style=\"width:308px;height:auto\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/568343727_1283969350432523_849750896067016564_n.jpg 512w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/568343727_1283969350432523_849750896067016564_n-240x300.jpg 240w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/568343727_1283969350432523_849750896067016564_n-10x12.jpg 10w\" sizes=\"auto, (max-width: 512px) 100vw, 512px\" \/><\/figure>\n<\/div>\n\n\n<p>DEBRA Croatia is an association that brings together people affected by rare diseases and their families, offering help, support, and connection. The organization is dedicated to improving the quality of life for individuals with epidermolysis bullosa and other rare diseases through a variety of initiatives and projects.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Main goal: Connecting patients and their families and organizing help and support<\/li>\n\n\n\n<li>Core principle: Supporting people living with rare diseases<\/li>\n\n\n\n<li>Specific focus: Improving the lives of individuals with epidermolysis bullosa and other rare diseases<\/li>\n<\/ul>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"119\" height=\"78\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/Debra-logo.png\" alt=\"\" class=\"wp-image-5792\" style=\"width:201px;height:auto\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/Debra-logo.png 119w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/Debra-logo-18x12.png 18w\" sizes=\"auto, (max-width: 119px) 100vw, 119px\" \/><\/figure>\n<\/div>\n\n\n<p>\ud83d\udccd DEBRA Hrvatska<br>Prilaz Gjure De\u017eeli\u0107a 30, Zagreb<br>\ud83d\udcde +385 1 4555 200<br>\ud83d\udce7 info@debra-croatia.com<br>\ud83c\udf10 <a href=\"http:\/\/www.debra-croatia.com\">www.debra-croatia.com<\/a><\/p>\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\"><div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"608\" height=\"237\" data-id=\"5793\" src=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/minzd-1-1.jpg\" alt=\"\" class=\"wp-image-5793\" srcset=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/minzd-1-1.jpg 608w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/minzd-1-1-300x117.jpg 300w, https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/minzd-1-1-18x7.jpg 18w\" sizes=\"auto, (max-width: 608px) 100vw, 608px\" \/><\/figure>\n<\/div><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>This content was created with the financial support of the Ministry of Health.\nThe content of this document is the sole responsibility of the Croatian Alliance for Rare Diseases and under no circumstances can it be considered as reflecting the views of the Ministry of Health.<\/p>","protected":false},"excerpt":{"rendered":"<p>October 25 marks Epidermolysis Bullosa (EB) Day, which also launches International Epidermolysis Bullosa Awareness Week (October 25\u201331, 2025).\nEpidermolysis bullosa is a very rare and severe genetic condition that causes extreme fragility of the skin and mucous membranes. Those affected are often referred to as \u201cbutterfly children\u201d because even the gentlest touch can cause painful wounds ...<\/p>","protected":false},"author":3,"featured_media":5790,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-5789","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Me\u0111unarodni tjedan svjesnosti o buloznoj epidermolizi - 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\/medunarodni-tjedan-svjesnosti-o-buloznoj-epidermolizi\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Me\u0111unarodni tjedan svjesnosti o buloznoj epidermolizi - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"25. listopada obilje\u017eava se Dan bulozne epidermolize (EB), koji ujedno otvara Me\u0111unarodni tjedan svjesnosti o EB-u (25.\u201331.10.2025.). Bulozna epidermoliza je vrlo rijetka, te\u0161ka genetska bolest koja uzrokuje ekstremnu krhkost ko\u017ee i sluznica. Oboljeli se \u010desto nazivaju \u201edjeca leptiri\u201c, jer i najmanji dodir mo\u017ee izazvati bolne...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/medunarodni-tjedan-svjesnosti-o-buloznoj-epidermolizi\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2025-10-25T10:17:36+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-10-27T10:18:22+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2025\/10\/Copy-of-Vizual-za-Facebook-Cover-1.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1640\" \/>\n\t<meta property=\"og:image:height\" content=\"924\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/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\/medunarodni-tjedan-svjesnosti-o-buloznoj-epidermolizi\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/medunarodni-tjedan-svjesnosti-o-buloznoj-epidermolizi\/\",\"name\":\"Me\u0111unarodni tjedan svjesnosti o buloznoj epidermolizi - 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