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 reported they had not encountered any media content related to rare diseases. 
• Trust in healthcare professionals remains high, with most individuals seeking information about rare diseases.

2. Family Members of Affected Individuals: 

• Also conducted in July and August 2024 using the CAWI method, this segment involved 102 respondents. 
• 56.1% reported that a family member diagnosed with a rare disease is a child. 
• The research revealed significant challenges in obtaining diagnoses, with 60.8% of cases diagnosed after the first symptoms were noticed, while 43.6% experienced delays of over a year. 

Which conclusions are made? 

The findings underscore the urgent need for enhanced public awareness and education surrounding rare diseases in Serbia. 

Continuous dialogue with healthcare professionals and sharing personal stories from affected families can significantly contribute to this effort. 

Rare Diseases in Serbia | Research

For a detailed analysis, please refer to the full report (in Serbian) available here. If you are interested in discussing these findings further or connecting with me on related topics, feel free to reach out through my profiles on social media. 
Are you a patient with a rare diagnosis or taking care of a patient? Let me know!