The State of Rare Diseases in Serbia: Insights from Recent Research
In a groundbreaking initiative led by the Association "Život" in collaboration with Ninamedia, the first research projects focusing on rare diseases in Serbia have been undertaken. The Conference "Rare Diseases Database", Novi Sad, November 2024 This research aims to evaluate the awareness and perspectives of various target groups regarding rare diseases, focusing on two main segments: the general adult population and families with diagnosed rare disease members. What are Key Findings? 1. General Population Survey: Conducted in July and August 2024, utilizing the TAPI method, the survey involved 1,008 respondents. The most recognized rare diseases included rare tumours, Spinal Muscular Atrophy (SMA), and Epidermolysis Bullosa (often referred to as "butterfly children"). A staggering 42.1% of participants believe that rare diseases are rarely mentioned in the media, highlighting the need for increased media coverage and awareness. 77.3% of respondents...
