For an EU commitment to tackling rare diseases

This conference aimed to help develop a European policy framework for rare diseases. This framework would integrate strategies across various fields, including research, digital technologies, healthcare and social protection, and by doing so, complement existing legislation and stimulate new actions on rare diseases at both European and national levels. 

The conference highlighted the European Economic and Social Committee’s (EESC) exploratory opinion "Leaving No One Behind: European Commitment to Tackling Rare Diseases", prepared at the request of the Hungarian Presidency of the Council of the EU. 

This publication summarises the main conclusions and recommendations of the Conference along its three main topics, namely on 

• Achieving a comprehensive European action plan for rare diseases by 2030
• Uniting civil society and patient associations to improve the health and social situations of people with rare diseases
• The progress made and challenges ahead for the European Health Data Space (EHDS).