{"id":944,"date":"2021-01-27T12:39:25","date_gmt":"2021-01-27T10:39:25","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?page_id=944"},"modified":"2025-09-17T11:32:16","modified_gmt":"2025-09-17T09:32:16","slug":"konferencije","status":"publish","type":"page","link":"https:\/\/rijetke-bolesti.com\/en\/konferencije\/","title":{"rendered":"Conferences"},"content":{"rendered":"

8th National Conference on Rare Diseases with International Participation<\/h2>\n\n\n\n

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

Through a rich program, the key topics highlighted were:<\/p>\n\n\n\n

The Patient\u2019s Voice \u2013 Daily Challenges and Support Living with a Rare Disease
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

National Framework for Rare Diseases \u2013 Current Challenges and Future Directions
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

Unmet Medical Needs \u2013 Between Science, Policy, and Reality
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

Regional Perspective \u2013 Similarities, Differences, and Opportunities for Cooperation in the Region
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

Professional Contributions
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

PROGRAM \u2013 8th National Conference on Rare Diseases<\/a><\/div>\n\n\n\n

The conference concluded with recommendations to strengthen regional cooperation, ensure a more transparent therapy approval process, and improve support for people living with rare diseases.<\/p>\n\n\n\n

 We thank our member associations and patients who shared their life stories, our patrons and institutional representatives, physicians, collaborators, colleagues from the region, and all sponsors who made the successful execution of the conference possible.<\/p>\n\n\n\n

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 You can view photos from the panels and social gatherings here: https:\/\/www.flickr.com\/photos\/203489046@N03\/albums\/72177720329075628\/<\/a><\/p>\n\n\n\n

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

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7th National Conference on Rare Diseases with International Participation <\/h2>\n\n\n\n
7th National Conference on Rare Diseases with International Participation<\/a><\/blockquote>