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June 2023

Czech Presidency’s Call to Action from the Expert Conference on Rare Diseases

The Czech Presidency of the EU Council organised the Expert Conference on Rare Diseases in Prague on 25-26 October 2022 to explore how the European Union can take continued steps towards a coordinated strategy for rare diseases to better addresses current unmet needs by setting meaningful goals for patients, families and for society at large, integrated at the national and regional levels.

The Expert Conference on Rare Diseases focused on five blocks that make up key pillars of a European strategy on rare diseases and led to five key recommendations:

  1. A call for a coordinated European Action Plan on Rare Diseases to address the challenges of people living with rare diseases and their families
  2. Early Diagnosis of Rare Diseases
  3. Revision of the Orphan Drug and Paediatric Drug Regulations
  4. Instruments for improving access to rare disease treatments
  5. Holistic healthcare pathways: Integrating European Reference Networks into European Healthcare and social systems