HELIOS project has started!
The first reunion of the HELIOS Management Committee was held last September.
The kick-off meeting of the project, Hemoglobinopathies in European Liaison of Medicine and Science (HELIOS), was held last 20th of September in Brussels, Belgium. The event gathered HELIOS Management Committee members, formed by experts and participants, all committed to creating a network of excellence to overcome the challenge that healthcare and research are facing towards the global spread of hemoglobinopathies, such as sickle cell disease and thalassemia syndromes.
HELIOS is chaired by Dr. Petros Kountouris from Cyprus Institute of Neurology and Genetics (CING), Cyprus, vice-chaired by Dr. María del Mar Mañú-Pereira (Hospital Universitari Vall d'Hebron) Spain, and counts on the participation of 107 members from 26 countries (Albania, Belgium, Bosnia&Herzegovina, Cyprus, Denmark, Egypt, France, Germany, Greece, Hungary, Italy, Kosovo, Malaysia, Malta, Moldova, Morocco, The Netherlands, North Macedonia, Portugal, Serbia, Slovakia, Slovenia, Spain, Turkey, United Kingdom and United States).
Five working groups will coordinate existing and emerging hemoglobinopathy-related activities in Europe, ranging from clinical and molecular research to data analysis and bioinformatics. Three of them are ERN-EuroBloodNet Members*:
- Molecular research and diagnosis: Aghia Sophia Children Hospital* - Jan Traeger-Synodinos
- Clinical research and patient management: Copenhagen University Hospital - Rigshospitalet* - Andreas Glenthøj
- Data management, sharing, and analysis: National Institute for Research in Digital Science and Technology (INRIA) - Francesco Cremonesi
- Education, training, and capacity building: AO Padua* - Raffaella Colombatti
- Dissemination and outreach: Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus - Fedele Bonifazi
With an enthusiastic and diverse group of participants, the HELIOS kick-off meeting set the stage for a promising journey towards improving the outcomes and quality of life for patients facing the challenges of hemoglobinopathies.