THALassaemia In Action: The THALIA2022 Project

Brief Description

The recent European migration flows of different causality, voluntary or forced, have changed the European landscape in the field of haemoglobin disorders, leading to a consistent increase of carriers and patients in all countries of the European Union, including formerly low prevalence countries, such as Scandinavian and Central European countries.

Additionally, the over-expanding phenomenon of the migration of haemoglobinopathies has been acknowledged by epidemiologists as “a public health concern”, that needs to be “more visible’’ at national and European level. These concerns are mainly due to the substantial disease burden of haemoglobinopathies and to the rise of novel therapies, their increased cost and subsequent economic burden for national health systems. Indeed, the need for targeted policy measures has become urgent, as the number of births is expected to increase across all EU countries in the coming years.

In acknowledgement of the above and to support EU countries to prevent a possible escalation, the Thalassaemia International Federation (TIF) has focused and tailored its successful working model to Europe and has deployed its activities in the region in the context of THALIA since 2018. THALIA2022 aims to build on and continue the efforts of THALIA2018-2021, paving the way for considerable impact in the countries of priority, with a view to continue its work in other countries in subsequent years.

Aim & Objectives

Through the development and implementation of well-designed, targeted activities aimed for patients with thalassaemia and/or other haemoglobinopathies and their families, healthcare professionals (HCPs), policymakers, as well as the general public, the THALIA2022 project seeks to attain four general objectives:

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 ongoing THALIA2022 Work Programme includes those core activities of TIF that address health and social challenges faced by patients with thalassaemia and other haemoglobinopathies living in EU countries.

It reflects and builds on TIF’s Pillars of Activities, namely Education (WP2), Awareness Raising (WP3), Policy Advocacy (WP4) and Research (WP5). Besides these four core WPs, the THALIA2022 also focuses on the dissemination of results (WP6) to ensure the project’s maximum visibility and impact.

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