HELIOS Action: Advancing research, education, and equity in hemoglobinopathies across Europe and beyond
Year: 2025
Type: article
Abstract: Recent decades have witnessed remarkable advances in hematology research, 1 and yet, for many affected populations, particularly those with sickle cell disease (SCD) and Thalassemia, more so in lowresource settings, clinical outcomes remain suboptimal. 2 Despite being among the most common inherited disorders globally, with an estimated 330,000 conceptions annually, 3 patients with hemoglobinopathies encounter fragmented care systems and unequal access to diagnosis and treatment, and there is limited coordination in research and clinical practices across countries.4 Although hemoglobinopathies have gained recognition as a global public health concern, 3 there are still four persistent challenges.First, there are only a limited number of harmonized, multicentric studies that capture the genetic and clinical variability of these disorders to enable personalized approaches in clinical management and treatment.5 Second, care standards for hemoglobinopathies remain inconsistent, with substantial gaps between and within countries.6 Third, there is limited access to structured training and clinical education, particularly in countries with underdeveloped health systems.7 Finally, a fragmented research landscape has impeded the development of innovative, cross-border strategies that could guide policy and practice.8 These limitations are compounded by poor coordination globally, restricting the sharing of knowledge and the development of common standards.The HELIOS Action (Haemoglobinopathies in European Liaison of Medicine and Science, www.heliosaction.eu) was launched in 2023 to address these persistent gaps, through networking and training activities.Funded by the European Cooperation in Science and Technology (COST), HELIOS is a collaborative open network designed to strengthen research infrastructure, standardize care practices, and promote inclusive participation in hemoglobinopathy-related science and policy.HELIOS thus provides a coordinated and inclusive platform and facilitates concerted action to tackle major challenges in hemoglobinopathies.Specifically, HELIOS fosters multicentric collaboration and genetic mapping to address HemaSphere.
Source: HemaSphere
DOI: 10.1002/hem3.70258
Authors: Sotiroula Chatzimatthaiou, Fedele Bonifazi, Anna C. Gimbert, Raffaella Colombatti, Francesco Cremonesi, Andreas Glenthøj, Elisabetta Mezzalira, Coralea Stephanou, Jan Traeger‐Synodinos, Darko Antic, Burak Durmaz, Eleni Gavriilaki, Baba Inusa, Annalisa Landi, Mariangela Pellegrini, Francesca Basile, Stephanie Muth, Holger Cario, Eleni Katsantoni, Dilem Ruhluel, Carsten Werner Lederer, María del Mar Mañú‐Pereira, Petros Kountouris
Institutions: Cyprus Institute of Neurology and Genetics, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Vall d'Hebron Institut de Recerca, ERN EuroBloodNet, University of Padua, Institut national de recherche en sciences et technologies du numérique, EPIONE: E-Patient : Images, données & mOdèles pour la médeciNe numériquE, Copenhagen University Hospital, Rigshospitalet, National and Kapodistrian University of Athens, University of Belgrade, Univerzitetski Klinički Centar Srbije, Ege University, Aristotle University of Thessaloniki, King's College London, Novo Nordisk (Denmark), Assistance Publique – Hôpitaux de Paris, Hôpital Saint-Louis, Universität Ulm, University Hospital Ulm, Academy of Athens, Biomedical Research Foundation of the Academy of Athens
Language: English
Subfield: Genetics
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,480
Award: G6137436089
OpenAlex ID: W4417115687