{"id":5657,"date":"2025-09-09T09:10:55","date_gmt":"2025-09-09T07:10:55","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=5657"},"modified":"2025-09-09T09:15:39","modified_gmt":"2025-09-09T07:15:39","slug":"8-nacionalna-konferencija-o-rijetkim-bolestima","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/8-nacionalna-konferencija-o-rijetkim-bolestima\/","title":{"rendered":"8th National Conference on Rare Diseases"},"content":{"rendered":"

The 8th National Conference on Rare Diseases with international participation was held at Hotel Zonar in Zagreb on September 4, 2025. It was organized by the Croatian Alliance for Rare Diseases, under the patronage of the President of the Republic of Croatia, the City of Zagreb, the Ministry of Health, and the Ministry of Social Welfare.<\/p>\n\n\n\n

The conference brought together patients, associations, experts, representatives of ministries and institutions, as well as international organizations.<\/p>\n\n\n\n

\u2728 Kroz bogat program istaknute su klju\u010dne teme:<\/p>\n\n\n\n

\ud83d\udd39 Rije\u010d pacijenata \u2013 svakodnevni izazovi i podr\u0161ka u \u017eivotu s rijetkom bole\u0161\u0107u
The first panel featured powerful testimonies from patients and their families. Discussions focused on psychological and social support, experiences of patients receiving therapy, and the long waiting times for drug approvals. <\/p>\n\n\n\n

\ud83d\udd39 Nacionalni okvir za rijetke bolesti \u2013 aktualni izazovi i budu\u0107e smjernice
The second panel included representatives from the Ministry of Health, Ministry of Social Welfare, Croatian Institute of Public Health (HZJZ), HALMED, medical professionals, and patient associations. The discussion revolved around the implementation of objectives from the National Program and transparency in the therapy approval process.<\/p>\n\n\n\n

\ud83d\udd39 Nezadovoljene medicinske potrebe \u2013 izme\u0111u znanosti, politike i stvarnosti
The third panel addressed how to involve patients in defining their own needs and how to align science, policy, and everyday reality.<\/p>\n\n\n\n

\ud83d\udd39 Regionalna perspektiva \u2013 sli\u010dnosti, razlike i prilike za suradnju u regiji
The fourth panel showed that significant differences exist in the Balkans regarding therapy availability and support, but also notable opportunities for stronger cross-border cooperation.<\/p>\n\n\n\n

\ud83d\udd39 Stru\u010dni doprinos
A special scientific segment of the conference included lectures on the molecular basis of neurodegenerative diseases and care for patients with phenylketonuria (PKU).<\/p>\n\n\n\n

\ud83e\udd1d Konferencija je zavr\u0161ila dono\u0161enjem preporuka za ja\u010danje regionalne suradnje, transparentniji proces odobravanja terapija te bolju podr\u0161ku osobama koje \u017eive s rijetkim bolestima.<\/p>\n\n\n\n

\ud83d\ude4f Zahvaljujemo na\u0161im udrugama \u010dlanicama i pacijentima koji su podijelili svoje \u017eivotne pri\u010de, pokroviteljima i predstavnicima institucija, lije\u010dnicima, suradnicima, kolegama iz regije te svim sponzorima koji su omogu\u0107ili uspje\u0161nu provedbu konferencije.<\/p>\n\n\n\n

You can view photos from the panels and social gatherings here:<\/p>\n\n\n\n

#RijetkeBolesti #Konferencija2025 #zagrlizarijetke<\/p>\n\n\n\n

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The 8th National Conference on Rare Diseases with international participation was held at Hotel Zonar in Zagreb on September 4, 2025. The event was organized by the Croatian Alliance for Rare Diseases, under the patronage of the President of the Republic of Croatia, the City of Zagreb, the Ministry of Health, and the Ministry of Social Welfare. The conference brought together patients, associations, experts, and\u2026<\/p>","protected":false},"author":3,"featured_media":5661,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[17],"tags":[],"class_list":["post-5657","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nacionalne-konferencije"],"yoast_head":"\n8. 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