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

Background

Published by the European Commission in July 2025, the Life Science Strategy seeks to establish the EU as a global leader in this field by 2030, transforming research into tangible benefits for health and sustainability. The European Strategy on Research and Technology Infrastructures, presented in September 2025, sets out a comprehensive approach to ensure that infrastructures remain world-class, more accessible, and better aligned with the needs of scientists, innovators and industry. The key element of these strategies is the development of robust R&I ecosystems building on initiatives such as the European Rare Diseases Research Alliance (ERDERA), investments in Advanced Therapy Medicinal Products (ATMPs) and the BBMRI-ERIC, the world’s largest human biobank.

The EESC is assessing how to effectively implement the Strategy for European Life Sciences and the Strategy on Research and Technology Infrastructures, with a particular focus on improving rare disease treatment. It builds on the EESC’s work carried out hitherto on promoting strong European cooperation on rare diseases and the establishment of a comprehensive EU action plan for Rare Diseases.

The exploratory opinion, requested by the Cyprus Presidency of the Council of the European Union, also evaluates how European Partnerships can promote inclusive participation of social partners and patient associations in governance bodies, enhance cross-border access to research and technology infrastructures, and strengthen research capacity, while ensuring innovation contributes to quality employment, fair working conditions, and robust social dialogue across the EU.

Key points

The EESC:

• welcomes the Strategy for European Life Sciences, and stresses that ensuring a holistic approach and a nourishing environment can make Europe a global leader in the life science (especially for rare diseases and genomics). Such an approach involves:

  o    comprehensive scientific and data-based methods to diagnose and understand the causes of diseases (e.g. genetics, unhealthy habits and lifestyles, pollution, stress, etc.);

  o   disseminating information on prevention and early diagnosis;

  o   screening, effective and accessible treatment;

  o   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.
• advocates mandatory representation of patient organisations, social partners, and civil society in governance bodies, which 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.

Additional information

Section: Transport, Energy, Infrastructure and the Information Society (TEN)

Opinion number: TEN/867

Opinion type: Exploratory opinion Presidency

Rapporteur: Milena Angelova (Group I - Bulgaria)

Date of adoption by section: 3 February 2026

Result of the vote: 92 in favour, 0 against, 0 abstentions

Date of adoption in plenary: 18-19 February 2026

Result of the vote: 219 in favour, 0 against, 4 abstentions

Contact

Marco Pezzani

Press Officer

Tel.: +32 2 546 9793 | Mob: +32 470 881 903

E-mail: marco.pezzani@eesc.europa.eu

Konstantina Angelopoulou

Administrator

Tel.: +32 2 546 9747

E-mail: konstantina.angelopoulou@eesc.europa.eu