THALassaemia In Action: The THALIA2024 Project
Escalation of Hemoglobin Disorders in the EU: Rising Prevalence and the THALIA Project Response
Recent migratory movements within Europe, whether voluntary or involuntary, have significantly altered the demographic dynamics surrounding thalassaemia and other haemoglobin disorders, culminating in a marked rise of carriers and patients throughout the European Union—an escalation evident even in countries once characterized by low prevalence rates, such as those in Scandinavia and Central Europe.
This developing trend of haemoglobinopathies crossing borders has generated concern among public health experts, who emphasize the need for greater awareness at both national and European levels. Concerns arise from the high prevalence of haemoglobin disorders and the introduction of new, albeit highly expensive, treatments that can strain healthcare systems. Given these factors and the anticipated rise in births across EU countries, urgent policy interventions are necessary.
In response to this scenario and with an aim to mitigate potential exacerbation, the Thalassaemia International Federation (TIF) has adapted its proven operational framework to the European context, implementing region-specific initiatives under the dedicated THALIA project since 2018. THALIA2024 project is poised to build upon the groundwork laid by its predecessors—THALIA2018-2021 and THALIA2022 through THALIA2023—fostering significant advancements in designated countries while also laying the foundation for extended outreach into additional nations in the following years.
Objectives and Goals
The THALIA2024 project is strategically designed to achieve four overarching goals through the meticulous development and execution of specialized activities tailored specifically to benefit individuals affected by thalassaemia and/or other haemoglobinopathies, their families, healthcare professionals (HCPs), policymakers, and the broader community.
Strengthen Εducation
To continue and strengthen the education of patients/parents and professionals, as well as the patients’ capacity, competency, and networking within and across countries and regions of the European Union. This will be achieved by investing in the development of materials dedicated to current challenges and facilitating the transfer of best practices from countries with more to countries with less experience in the field.
Raise Αwareness
To further raise awareness on thalassaemia and other haemoglobinopathies, with a specific focus on the importance of health and social care amongst the public at large, as well as amongst THALIA target audiences, at national and EU levels. This is to be accomplished by expanding the Federation’s Network and engaging in active dialogue with EU-based partners in the context of meetings, conferences and other events.
Improve Policies
To facilitate the development of synergies between EU Member States for the exchange of best practices and transferrable knowledge and to actively contribute to the improvement of existing policies pertaining to haemoglobinopathies at national and EU levels. This goal will be fulfilled by transferring the views of patients from the grassroots to national competent authorities in the context of high-level events.
Support Research
To continue collecting and sharing data focused on the clinical and social care of people with thalassaemia and haemoglobinopathies and to support research programmes undertaken by EU academic bodies and consortia. The production of relevant informational materials and the participation in scientific conferences are a key means to achieving this objective.
Core Activities
The THALIA2024 Work Programme continues with its mission-critical initiatives, directed towards addressing the multifaceted health and societal obstacles encountered by individuals living with thalassaemia and other haemoglobin disorders within EU territories.
This programme is a direct embodiment of TIF’s established Pillars of Activities, incorporating essential components like Education (WP2), Awareness Raising (WP3), Policy Advocacy (WP4), and Research (WP5). Complementing these integral activities, THALIA2024 also places emphasis on the strategic dissemination of results (WP6), striving to amplify the visibility and influence of the project’s outcomes.
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THALIA is funded by the European Union under the Specific Grant Agreement (SGA) No. 101176329. Views and opinions expressed are however those of the author(s) only and do not reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.