We are proud to share that the 5th Regional Conference on Rare Diseases, held in Novi Sad, successfully brought together experts, patients, decision-makers, and the wider community. The theme of this year’s conference was Diagnostics in Rare Diseases.

The President of the “Život” Association, Bojana Mirosavljević, announced a significant contribution to improving systemic solutions for rare diseases in Serbia. The Association will provide the state with the Rare Diseases Database, a unique platform containing key information on rare diseases, thereby creating opportunities for the further development of effective solutions.

In cooperation with the research agency NinaMedia, the first national survey on rare diseases in Serbia was also conducted. The results showed a significant reduction in the time required to obtain a diagnosis, partly thanks to Zoja’s Law — a legislative initiative that introduced key changes benefiting both patients and physicians. Nearly 40% of respondents received a diagnosis within six months, while around 40% were diagnosed within one to three years, representing major progress.

Our strategic advocacy efforts have also been recognized at the EU level, where this issue has been discussed for years. ERDERA (European Rare Diseases Research Alliance) has now established a strategic goal that diagnoses should be confirmed within six months from the onset of first symptoms, contributing to a shorter diagnostic journey for patients.

A special moment of the conference was the presentation of certificates of appreciation to institutions dedicated to rare diseases. The awards were presented to:

• Milica Đurđević Stamenkovski, Minister for Family Welfare and Demography
• Marina Soković, Assistant Minister for Science
• Đorđe Todorov, State Secretary at the Ministry of Labour, Employment, Veteran and Social Affairs
• Prof. Dr. Sanja Radojević Škodrić, Director of the Republic Health Insurance Fund

A special certificate of appreciation was awarded to Tamara Vučić, spouse of the President of Serbia, for her long-standing engagement in increasing recognition and visibility for the rare disease community.

Diagnostics in rare diseases are the key to accessing therapies, and steps like these are essential for the continued advancement of the healthcare system.

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