Leaving No One Behind: European Commitment to Tackling Rare Diseases

Key points

The EESC

• calls on the Commission to :
  • launch the proposal for a comprehensive European Action Plan on Rare Diseases (APRD) with SMART targets that can be achieved by 2030 to enable the diagnosis of rare disease patients within one year;
  • set up a Steering Group for the European APRD composed of experts from Member States, EURORDIS members and the EESC to ensure coordination and cooperation, monitoring and supervision of the APRD;
  • encourage agreements with Member States on the content, updating, application and monitoring of national plans for RD;
  • guarantee financing and feasibility of the Action Plan and ensure the necessary budgetary resources for health in the Multiannual Financial Framework for 2028-2035.
• recommends that the APRD set common and measurable goals that will help define and implement national plans and strategies for RD, encourage Member States and continue cooperation at EU level;
• calls for specific training to strengthen diagnostic capacities both for healthcare workers, and for social workers and social welfare staff to be able to care more effectively for people with RD.