A new scientific publication entitled “Mapping Expertise and Educational Needs for Hemoglobinopathies: Insights from HELIOS COST Action Healthcare Professionals” has been published in the journal Blood Global Hematology. The article is part of the activities of the HELIOS – Haemoglobinopathies in European Liaison of Medicine and Science COST Action.
The paper presents the results of a survey conducted within the HELIOS network with the aim of mapping existing expertise and identifying key educational needs among healthcare professionals involved in the care of and research on haemoglobinopathies, such as thalassaemia and sickle cell disease. The study involved professionals from 27 countries, representing a wide range of disciplines and levels of experience.
Findings highlight a strong concentration of expertise in diagnostics and molecular pathophysiology, alongside significant gaps in critical areas including interdisciplinary models of care, transplantation, palliative care, and comprehensive patient management. Among survey respondents there is a particularly strong interest in cross-cutting and emerging topics, such as data analysis, artificial intelligence, research methodologies, and ethical, legal and social issues related to rare diseases.
The publication emphasises the strategic role of HELIOS as an international collaborative network supporting the development of multidisciplinary, needs-driven training programmes in the field of haemoglobinopathies. In this context, Fondazione Gianni Benzi actively contributes to the scientific and coordination activities of the Action, with its researchers participating in the study.
Overall, the article shows how structured initiatives for international networking and education, such as HELIOS, are essential to strengthening professional competencies in the field of hemoglobinopathies and, in the long term, to improving the quality and equity of patient care across Europe and beyond.