Programme French Presidency of Council of European Union on rare diseases

France has published its programme for the Presidency of the Council of the European Union from 1 January to 30 June 2022. The programme details the priorities and guidelines of the next six months, including in the field of health. On rare diseases, the programme indicates that the French Presidency will be holding a high-level conference entitled “Ministerial Conference on Research and Care Pathways: For a European policy on rare diseases” on 28 February 2022. The aim of this high-level conference, in accord with the Presidency Trio (including France, Czech Republic and Sweden) will be to put forward recommendations to further develop European regulations concerning rare diseases. The conference will provide the occasion to define the EU roadmap for this matter and to collectively prepare to implement a European plan for rare diseases by 2030.

A  conference regarding health and data was held on 2 February 2022, in Paris. Entitled “Citizenship, ethics and health data”, it aimed to promote the creation of a European ethical framework for data and digital health. This framework would ensure coherence with the European foundations of citizens’ rights and ethics highlighted during the COVID-19 pandemic. This conference was part of a legislative agenda:

  • notably via the draft Directive/Regulation on the future European Health Data Space, which is the responsibility of the EU Commission
  • the EU wants to promote its “digital model” (notably shaped by the Covid European digital certificate), aligned with its sovereignty and  its values.