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.

The conference brought together patients, associations, experts, representatives of ministries and institutions, as well as international organizations.

✨ Kroz bogat program istaknute su ključne teme:

🔹 Riječ pacijenata – svakodnevni izazovi i podrška u životu s rijetkom bolešću
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.

🔹 Nacionalni okvir za rijetke bolesti – aktualni izazovi i buduće 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.

🔹 Nezadovoljene medicinske potrebe – između 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.

🔹 Regionalna perspektiva – sličnosti, 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.

🔹 Stručni doprinos
A special scientific segment of the conference included lectures on the molecular basis of neurodegenerative diseases and care for patients with phenylketonuria (PKU).

🤝 Konferencija je završila donošenjem preporuka za jačanje regionalne suradnje, transparentniji proces odobravanja terapija te bolju podršku osobama koje žive s rijetkim bolestima.

🙏 Zahvaljujemo našim udrugama članicama i pacijentima koji su podijelili svoje životne priče, pokroviteljima i predstavnicima institucija, liječnicima, suradnicima, kolegama iz regije te svim sponzorima koji su omogućili uspješnu provedbu konferencije.

You can view photos from the panels and social gatherings here:

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