Description
Haemoglobinopathies, including sickle cell disease and thalassaemia syndromes, are the commonest monogenic diseases, with millions of patients and carriers worldwide. Their global spread has increased due to growing population movements, posing a major healthcare and research challenge. In many European countries, figures on the prevalence of haemoglobinopathies are largely underestimated owing to the lack of national registries, poor patient access to diagnosis and treatment and the absence of international synergies.
To fill this gap, this Action will build a network of excellence for integrating, harmonising, and spreading the existing knowledge and for developing innovative services and tools, thus improving knowledge accessibility and healthcare equally across Europe and beyond. HELIOS comprises five working groups that will coordinate existing and emerging haemoglobinopathy-related activities in Europe, ranging from clinical and molecular research to data analysis and bioinformatics, aiming to advance health care systems, contribute to informed policymaking and improve survival and quality of life for existing and future patients.
To achieve this, the Action has brought together a diverse group of professionals from different disciplines (e.g., clinical research, laboratory genetics and molecular diagnosis, computational biology, bioethics, data management) and sectors (e.g., universities, research centres, healthcare centres, biobanks, private sector). The Action will expand among COST countries, International Partner Countries and Near Neighbour Countries, while respecting gender balance and promoting the active participation of young researchers and innovators.
Action keywords
haemoglobinopathies - thalassaemia - sickle cell disease - harmonisation -
Management Committee
Country | MC Member |
---|---|
Albania | |
Albania | |
Armenia | |
Belgium | |
Bosnia and Herzegovina | |
Croatia | |
Cyprus | |
Cyprus | |
Denmark | |
France | |
France | |
Germany | |
Germany | |
Greece | |
Greece | |
Italy | |
Italy | |
Malta | |
Malta | |
Moldova | |
Netherlands | |
North Macedonia | |
North Macedonia | |
Portugal | |
Portugal | |
Serbia | |
Serbia | |
Slovakia | |
Slovenia | |
Spain | |
Spain | |
Türkiye | |
Türkiye | |
United Kingdom | |
United Kingdom |
Main Contacts
Action Contacts
COST Staff
Leadership
Role | Leader |
---|---|
Action Chair | |
Action Vice-Chair | |
Grant Holder Scientific Representative | |
Science Communication Coordinator | |
Grant Awarding Coordinator | |
WG1 Leader | |
WG2 Leader | |
WG3 Leader | |
WG4 Leader | |
WG5 Leader |
Additional roles
Role | Leader |
---|---|
WG1 co-leader | |
WG2 co-leader | |
Patient Liaison Coordinator | |
YRI Coordinator | |
Ethics, Gender Equality and Diversity Coordinator | |
International and Cross-sectoral Expansion Coordinator |
Working Groups
Number | Title | Leader |
---|---|---|
1 | Molecular research and diagnosis | |
2 | Clinical research and patient management | |
3 | Data management, sharing, and analysis | |
4 | Education, training, and capacity building | |
5 | Dissemination and outreach |
Express your interest to join any of the working groups by applying below.
It is required to have an e-COST profile to submit your application. If needed, create it first and then click 'Apply'.
ApplyMembership
Name | Working Group | Country |
---|---|---|
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1, WG 4 | Greece | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Spain | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1, WG 2, WG 3 | Spain | |
WG 1, WG 2, WG 4, WG 5 | Cyprus | |
WG 1, WG 4 | Portugal | |
WG 1 | Netherlands | |
WG 1, WG 2, WG 3, WG 4 | Türkiye | |
WG 1, WG 3, WG 4 | Greece | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 1, WG 3, WG 4 | Portugal | |
WG 1, WG 2, WG 3, WG 4 | Albania | |
WG 1, WG 4, WG 5 | Slovenia | |
WG 1, WG 2 | Slovakia | |
WG 1, WG 4 | Serbia | |
WG 1, WG 2, WG 4 | Türkiye | |
WG 1, WG 2, WG 4 | Morocco | |
WG 1 | Spain | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1, WG 4 | Portugal | |
WG 1, WG 3 | Serbia | |
WG 1, WG 2 | United States | |
WG 1 | France | |
WG 1, WG 2, WG 4, WG 5 | Italy | |
WG 1, WG 3, WG 4 | United Kingdom | |
WG 1, WG 2 | Belgium | |
WG 1, WG 2 | Slovakia | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Bosnia & Herzegovina | |
WG 1, WG 3, WG 4 | Serbia | |
WG 1, WG 2, WG 4 | Serbia | |
WG 1, WG 4 | Kosovo* | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Kosovo* | |
WG 1, WG 2 | Slovakia | |
WG 1, WG 3 | Türkiye | |
WG 1, WG 3, WG 4 | Serbia | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Serbia | |
WG 1, WG 2 | Slovakia | |
WG 1, WG 2, WG 3 | France | |
WG 1, WG 2, WG 3, WG 4 | Germany | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Malaysia | |
WG 1, WG 2, WG 4, WG 5 | Egypt | |
WG 1, WG 4, WG 5 | Albania | |
WG 1, WG 3 | Türkiye | |
WG 1 | Türkiye | |
WG 1, WG 3 | Türkiye | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 1 | Germany | |
WG 1, WG 2, WG 3 | Cyprus | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1, WG 2, WG 4, WG 5 | Türkiye | |
WG 1 | Netherlands | |
WG 1, WG 2 | Slovakia | |
WG 1, WG 2, WG 4 | Malta | |
WG 1 | Netherlands | |
WG 1 | Netherlands | |
WG 1 | Spain | |
WG 1 | Denmark | |
WG 1 | Italy | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1 | Greece | |
WG 1, WG 3, WG 5 | Greece | |
WG 1, WG 4 | Spain | |
WG 1, WG 2, WG 5 | Nigeria | |
WG 1, WG 2, WG 4 | France | |
WG 1, WG 3 | United Kingdom | |
WG 1 | Greece | |
WG 1 | Cyprus | |
WG 1 | Malta | |
WG 1 | Cyprus | |
WG 1, WG 2, WG 4, WG 5 | United Kingdom | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 1, WG 4 | Albania | |
WG 1, WG 2 | United Kingdom | |
WG 1, WG 2, WG 3, WG 4, WG 5 | United Kingdom | |
WG 1, WG 2, WG 3 | Nigeria | |
WG 1 | Greece | |
WG 1 | Greece | |
WG 1 | Greece | |
WG 1 | Greece | |
WG 1, WG 4, WG 5 | Greece | |
WG 1, WG 4, WG 5 | Türkiye | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 1 | Greece | |
WG 1, WG 2, WG 4, WG 5 | Germany | |
WG 1, WG 3, WG 4, WG 5 | Armenia | |
WG 1, WG 4, WG 5 | Belgium | |
WG 1, WG 3, WG 4 | Portugal | |
WG 1, WG 4, WG 5 | Italy | |
WG 1 | Türkiye | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Armenia | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 1 | Czechia | |
WG 1, WG 2, WG 3 | Cyprus | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Türkiye | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Armenia | |
WG 1, WG 3, WG 5 | Portugal | |
WG 1, WG 2 | Spain | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 1 | United Kingdom | |
WG 1 | Türkiye | |
WG 1, WG 3, WG 4 | Türkiye | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Albania | |
WG 1, WG 2, WG 3 | Cyprus | |
WG 1, WG 2, WG 3, WG 4 | Switzerland | |
WG 1 | Türkiye | |
WG 1 | United Kingdom | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Armenia | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 1, WG 2, WG 5 | Nigeria | |
WG 1, WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 2 | Denmark | |
WG 2 | United Kingdom | |
WG 2, WG 4 | Albania | |
WG 2, WG 4 | France | |
WG 2 | Belgium | |
WG 2 | Spain | |
WG 2, WG 4 | United Kingdom | |
WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 2, WG 3, WG 4, WG 5 | Serbia | |
WG 2, WG 3, WG 4 | Greece | |
WG 2, WG 3, WG 4, WG 5 | Cyprus | |
WG 2 | France | |
WG 2 | France | |
WG 2, WG 4, WG 5 | Albania | |
WG 2, WG 3, WG 4, WG 5 | Albania | |
WG 2, WG 3, WG 4 | Albania | |
WG 2, WG 3, WG 4, WG 5 | Kosovo* | |
WG 2 | Hungary | |
WG 2, WG 3, WG 4, WG 5 | Moldova | |
WG 2, WG 3, WG 4 | Italy | |
WG 2, WG 3 | North Macedonia | |
WG 2, WG 4 | France | |
WG 2 | France | |
WG 2, WG 3, WG 4 | Albania | |
WG 2, WG 3 | Türkiye | |
WG 2, WG 3, WG 4, WG 5 | Türkiye | |
WG 2, WG 3, WG 4, WG 5 | Türkiye | |
WG 2 | Greece | |
WG 2, WG 3, WG 4 | North Macedonia | |
WG 2, WG 3 | Italy | |
WG 2, WG 4, WG 5 | Greece | |
WG 2, WG 4 | Italy | |
WG 2, WG 3, WG 4 | France | |
WG 2 | France | |
WG 2 | Greece | |
WG 2, WG 3, WG 4, WG 5 | Italy | |
WG 2 | Greece | |
WG 2, WG 3, WG 4, WG 5 | Moldova | |
WG 2, WG 3, WG 4 | Greece | |