{"id":3527,"date":"2023-06-14T16:08:45","date_gmt":"2023-06-14T14:08:45","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=3527"},"modified":"2025-04-02T11:52:15","modified_gmt":"2025-04-02T09:52:15","slug":"7-nacionalna-konferencija-o-rijetkim-bolestima-s-medunarodnim-sudjelovanjem","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/7-nacionalna-konferencija-o-rijetkim-bolestima-s-medunarodnim-sudjelovanjem\/","title":{"rendered":"7th National Conference on Rare Diseases with International Participation"},"content":{"rendered":"

The 7th National Conference on Rare Diseases with International Participation was held in Zagreb, at Hotel Academia, on Saturday, June 10, 2023, under the patronage of the City of Zagreb and the Ministry of Health of the Republic of Croatia<\/h3>\n\n\n\n

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Among the many participants\u2014including representatives of institutions, patient groups, and associations advocating for people with rare diseases, as well as experts in the field\u2014the conference was also attended by Dunja Skoko Poljak, M.D. <\/em>Head of the Public Health and Healthcare Protection Sector, representing the Ministry of Health of the Republic of Croatia. Anica Je\u017ei\u0107, <\/em>Head of the Sector for the Development and Improvement of Social Services, representing the Ministry of Labor, Pension System, Family and Social Policy of the Republic of Croatia, and \u00a0\u0160ani Samard\u017ei\u0107, M.D., <\/em>Senior Expert Advisor in the City Office for Social Protection, Health, Veterans, and Persons with Disabilities, representing the City of Zagreb.<\/p>\n\n\n\n

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The conference was opened by Sara Bajlo<\/em>Vice President of the Croatian Alliance for Rare Diseases, provided an introduction to the theme of the conference, while Ms. Mladenka \u0160ari\u0107 moderated the conference and organized the panel discussions.<\/p>\n<\/div>

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As part of the program, three panel discussions were held, titled:<\/p>\n\n\n\n

RARE DISEASES IN CROATIA \u2013 STATE ANALYSIS AND COLLABORATION<\/p>\n\n\n\n

RARE DISEASES \u2013 HOLISTIC APPROACH TO CARE<\/p>\n\n\n\n

RARE DISEASES \u2013 STATUS ANALYSIS IN THE REGION<\/p>\n\n\n\n

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After the panel and lectures by our colleagues from the European Organization for Rare Diseases (EURORDIS), a special segment called 'Words of the Patients' was held, organized by member associations. Parents of children and individuals living with Rett syndrome, Cystic Fibrosis, Fabry disease, and Spinal Muscular Atrophy shared their experiences of living with rare diseases.<\/p>\n\n\n\n

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Medical students, our long-time volunteers, then introduced the Student Helpline for Rare Diseases.<\/p>\n<\/div><\/div>\n\n\n\n

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At the end of the program, the Elective Assembly of the Croatian Alliance for Rare Diseases was held, during which new leadership was elected.<\/p>\n\n\n\n

Sara Bajlo was elected as the President of the Alliance, and the members of the Board of Directors are Jadranka Brozd, Katarina \u010cizmin, Kornelije Jurani\u0107, Josip Stoji\u0107, Vana Vuki\u0107, and Jasenka Wagner Kostadinovi\u0107. The new members of the Supervisory Board of the Alliance are Miranda Kokotovi\u0107, Marina Lozan\u010di\u0107, and Ida Mairkovi\u0107 Knaus.<\/p>\n\n\n\n

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Sedma nacionalna konferencija o rijetkim bolestima s me\u0111unarodnim sudjelovanjem odr\u017eana je u hotelu Academia, Zagreb, u subotu 10. lipnja 2023. pod pokroviteljstvom Grada Zagreba i Ministarstva zdravstva Republike Hrvatske. Me\u0111u brojnim sudionicima \u2013 predstavnicima institucija, grupa pacijenata i udruga koje zastupaju oboljele od rijetkih bolesti…<\/p>","protected":false},"author":3,"featured_media":3528,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[1,17],"tags":[],"class_list":["post-3527","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-nacionalne-konferencije"],"yoast_head":"\n7. 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Me\u0111u brojnim sudionicima \u2013 predstavnicima institucija, grupa pacijenata i udruga koje zastupaju oboljele od rijetkih bolesti...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/7-nacionalna-konferencija-o-rijetkim-bolestima-s-medunarodnim-sudjelovanjem\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2023-06-14T14:08:45+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-04-02T09:52:15+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2023\/06\/IMG_2444.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2304\" \/>\n\t<meta property=\"og:image:height\" content=\"1600\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\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=\"7 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/rijetke-bolesti.com\/7-nacionalna-konferencija-o-rijetkim-bolestima-s-medunarodnim-sudjelovanjem\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/7-nacionalna-konferencija-o-rijetkim-bolestima-s-medunarodnim-sudjelovanjem\/\",\"name\":\"7. 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