A new scientific publication entitled “HELIOS Action: Advancing research, education, and equity in haemoglobinopathies across Europe and beyond” has been published in the HemaSphere journal. The article focuses on the HELIOS Action – Haemoglobinopathies in European Liaison of Medicine and Science, an initiative launched in 2023 and funded by the European Cooperation in Science and Technology (COST).
The paper examines the key challenges that continue to affect the management of haemoglobinopathies, such as sickle cell disease and thalassemia. Although these are among the most common inherited disorders worldwide, they are still characterised by fragmented care systems, inequalities in access to diagnosis and treatment, limited harmonisation of research efforts, and a lack of structured clinical training programs, particularly in low-resource settings.
The publication describes how the HELIOS project addresses these challenges through an inclusive and collaborative model based on networking and training activities. The Action aims to strengthen research infrastructures, promote the standardisation of clinical practices, and support equitable participation in research and health policy. The project is structured into five thematic Working Groups, focusing respectively on molecular research and diagnosis, clinical research and patient management, data management and interoperability, education and capacity building, and dissemination, outreach, and stakeholder engagement.
It is also highlighted the strong international dimension of the HELIOS network, which currently includes more than 245 members from 36 countries, with a particular emphasis on the inclusiveness, the involvement of young researchers, and the representation of countries with lower participation in European research programs.
Members of the Fondazione Gianni Benzi team also contributed to the publication and are involved in the HELIOS project as Leader of WG5 – Dissemination and Outreach (Fedele Bonifazi), Ethics, Gender Equality and Diversity Coordinator (Annalisa Landi) and Communication Officer (Francesca Basile).
Overall, the article underlines how international coordination and collaboration initiatives such as HELIOS represent a key tool to enhance research quality, foster the harmonisation of care standards, and promote more equitable access to therapies and services for people living with haemoglobinopathies, ultimately supporting the development of evidence-based health policies in Europe and beyond.
Read the full article in HemaSphere.