The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.
As a result of and informed by the planned sessions' aims of the 12th ECRD, an Open Letter addressed to the European Commission has been put together, calling on the next European leaders to:
- Maintain health at the forefront of future policies and programmes.
- Develop a comprehensive European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives.
- Immediately address the most pressing needs of the rare disease population by integrating the actions ‘within reach’ that we have collectively identified within the work programmes of the next years.