The Regional Conference on Rare Diseases, which brought together experts from the region and abroad to discuss the latest achievements and challenges in the diagnosis of rare diseases, was held yesterday in Novi Sad.
The theme of this year’s conference, organized by the Association for Rare Diseases in Children “Život”, was “Diagnostics in Rare Diseases”.
The participants were addressed by Tamara Vučić, the First Lady of Serbia, who pointed out that in 2025, 10.2 billion dinars would be allocated from the budget for the treatment of rare diseases, three billion more than this year. She also compared the number of treated patients in 2013 (10 treated patients) and 2024 (733 treated patients), and emphasized that 40 types of different rare diseases could now be treated.
Director General of the National Health Insurance Fund, Sanja Radojević Škodrić, said that irreversible progress had been made in this area in Serbia and that a large number of modern genetic analyses had been introduced in the last two years, which had contributed to the improvement of early detection of rare diseases.
The Minister of Family Welfare and Demography, Milica Đurđević Stamenkovski, announced that the delivery of vouchers to the addresses of all persons who requested support, and were added to the register of the Batut Institute by the end of October, would be completed next week.
The representative of the company “Heliant”, Vukašin Radulović, also spoke at the conference, and delivered the presentation entitled “Digital solutions for diagnostic odyssey”.
He also presented some digital solutions that could help patients reach specialized experts, inform and empower them (telemedicine), relieve clinicians of the memory of a multitude of tabular data (clinical pathways), help them recognize deviations from the usual (notification system), and better understand diseases and the patient’s path (EHDEN registers – European Health and Evidence Network).
