HELIOS aims to build a network of excellence to integrate, harmonise and disseminate existing knowledge on haemoglobinopathies, including sickle cell anaemia and thalassaemic syndromes. It also aims to develop innovative services and tools, improving accessibility to knowledge and healthcare throughout Europe and beyond. HELIOS' five working groups focus on various aspects of haemoglobinopathies, from clinical and molecular research to data analysis and bioinformatics, with the aim of advancing healthcare systems, contributing to informed policies and improving the survival and quality of life of current and future patients.

ROLE OF THE FOUNDATION AND MAIN OUTPUTS
The Foundation plays an active and multi-layered role in HELIOS, with its staff holding key positions across the network's governance and scientific structure. F. Duccio Bonifazi serves as Action Vice Chair, Francesca Basile co-leads Working Group 5 – Dissemination and Outreach, and Annalisa Landi coordinates the network's Ethics, Gender Equality and Diversity activities.
Main outputs include:
- Action website (Deliverable 5.1)
- Communication, dissemination and exploitation plan – initial release and update (Deliverable 5.2)
- Report on dissemination, exploitation, sustainability, and public outreach (Deliverable 5.3)
- Kick-off meeting completed, and management structure formed (Milestone 1)
- Action website released (Milestone 2)
- First release of dissemination and exploitation plan (Milestone 5)
- Interim reports on training, dissemination, and gender balance released (Milestone 8)
- Mapping expertise and educational needs for hemoglobinopathies: insights from HELIOS COST Action health care professionals, Mezzalira E. et al., 2026, https://doi.org/10.1016/j.bglo.2025.100060
- HELIOS Action: Advancing research, education, and equity in hemoglobinopathies across Europe and beyond, Chatzimatthaiou S. et al., 2025, https://doi.org/10.1002/hem3.70258

HELIOS is funded by the COST Association (European Cooperation in Science and Technology) (Action CA22119)

PARTNERS:

• Fondazione per la Ricerca Farmacologica Gianni Benzi - ETS, Italy
• The Cyprus Insitute of Neurology & Genetics, Cyprus
• Vall d’Hebrón Institut de Recerca, Spain
• National and Kapodistrian University of Athens, Greece
• Aristotle University of Thessaloniki, Thessaloniki, Greece
• Copenhagen University Hospital – Rigshospitalet, Denmark
• Inria, France
• ERN-EuroBloodNet – AP-HP hôpital Saint, France
• University of Padova, Italy
• Clinic for hematology, University Clinical Center, Serbia
• Ege UniversityEge University, Faculty of Medicine Department of Medical Genetics, Turkey
• King’s college London, United Kingdom