1st HELIOS Working Group and Management Committee meeting

HELIOS aims to improve the management and understanding of haemoglobinopathies across Europe and participating countries through a series of strategic initiatives. These efforts include mapping current diagnostic procedures to standardize practices, developing harmonized guidelines for diagnosis, biobanking, variant interpretation, and clinical management, and implementing standardized Case Report Forms (CRF) for efficient data collection. Furthermore, the project evaluates the adoption of new therapies and treatments, establishes the HELIOS training program for healthcare professionals, and initiates a comprehensive plan for communication, dissemination, and exploitation of findings. Together, these initiatives are designed to enhance the quality of care and accessibility of information for those affected by haemoglobinopathies.

The Work Group (WG) meetings will span over 1.5 days. On the first day, parallel sessions for each WG will be held, followed by a comprehensive meeting involving all WGs to discuss the outcomes on the second day for half a day. Additionally, a half-day Management Committee meeting will conclude the event.