The Conference on Rare Diseases in Warsaw, Poland, held on April 10, 2025, was a significant event focused on shaping a European Action Plan on Rare Diseases. Organized by the European Economic and Social Committee (EESC), the Polish Ministry of Health, and the Medical University of Warsaw, the conference aimed to strengthen European-national cooperation and improve policies for rare disease patients. The conference brought together policymakers, researchers, clinicians, and patient advocates to pave the way for the rare disease community.
Key discussions included:
- Developing a European policy framework to complement existing legislation and promote investment.
- Enhancing cooperation at EU and national levels to improve diagnosis and treatment.
- Advocating for a comprehensive European Action Plan with clear, measurable objectives.
- Bridging research and patient care, with a dedicated side-event on April 11, 2025, for clinicians, researchers, and patients.
The conference was held under the Polish Presidency of the EU Council, emphasizing the urgency of reducing diagnosis time and ensuring better access to genetic diagnostics and therapies.