The European Life Science Strategy along with the Strategy on Research and Technology infrastructures with focus on the treatment of rare diseases

Key points

The EESC:

• welcomes Strategy for European Life Sciences, and stresses that ensuring a holistic approach and nourishing environment can make Europe a global leader in the life science (especially for rare diseases and genomics). Such an approach involves:
  • comprehensive scientific and data-based methods to diagnose and understand the causes of diseases (e.g. genetics, unhealthy habits and lifestyles, pollution, stress, etc.)
  • disseminating information on prevention and early diagnosis
  • screening, effective and accessible treatment
  • high-quality care and accessible support infrastructure for patients and their families.
• supports the call of the European Parliament for an EU Action Plan for Rare Diseases to be swiftly adopted, including by reviving and further developing the Tartu call for a healthy lifestyle and embracing the ‘One Health’ approach.
• considers that research and technology infrastructure (including that focused on rare diseases) is a key enabler for the development of the life sciences and the longevity economy and that it should include the whole longevity culture (including prevention, healthy food, lifestyle, balneo treatment and recreation, physical and mental health, and many other elements) beyond the diagnosis and treatment of diseases.
• recommends establishing translational centres for rare diseases in each Member State coordinated at EU level for consistency.
• underlines that European partnerships are vital in fostering the meaningful and structured engagement of the full spectrum of stakeholders and asks for formalised mechanisms for their participation.
• advocates mandatory representation of patient organizations, social partners, and civil society in governance bodies, that through structured, transparent and systematic involvement will enable defining priorities and data protocols, transparency requirements on decisions and data use, and a mechanism ensuring that their contributions are effectively integrated.