International Rare Disease Day tomorrow, Serbia needs a new National Program
The National Organization for Rare Diseases of Serbia (NORBS) today, on the occasion of International Rare Disease Day, which is celebrated on the last day of February, organized a round table where it was emphasized that the adoption of a new National Program is crucial for a systemic approach to diagnostics and therapy accessibility for patients.
TL;DR
- NORBS organized a round table for International Rare Disease Day, stressing the need for a new National Program for systemic diagnosis and therapy access.
- The current budget for rare diseases has increased significantly to 10.2 billion dinars, with 100% utilization, but is still insufficient for new patients.
- Over 400 patients are awaiting decisions and the start of treatment.
- A new National Program, missing since 2022, is crucial for planning diagnostics, therapies, and access to innovative drugs.
- Screening programs have improved, and advanced therapies for conditions like spinal muscular atrophy are available.
- Connecting primary, secondary, and tertiary healthcare sectors is a key challenge to speed up diagnosis and treatment.
- Over 350,000 citizens in Serbia live with a rare disease, 72% are genetic and manifest in childhood, and adequate therapy exists for only 5%.