THALassaemia In Action 2022

ended

Thalassaemia, a hereditary genetic childhood blood disorder which if not appropriately treated can result in serious organ complications, disability and premature death. Equal access to quality health and social care through effective prevention and clinical management national plans, based on best practices constitutes the focus of the Thalassaemia International Federation, that have been thus far in the EU been hampered by disease rarity, limited health system visibility, confined medical expertise and migration flows. THALassaemia In Action (THALIA) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities: 1. Continue to strengthen the education of patients/parents and healthcare professionals, as well as patient capacity, competency and networking within and across countries and regions of the EU, by the development of educational material, e-learning resources and workshops 2. Raise awareness on thalassaemia and other haemoglobinopathies, with a specific focus on the importance of health and social care among the general public, as well as among THALIA target groups, at national and EU levels, by expanding the Federation’s Network and engaging in active dialogue with EU-based partners in the context of meetings, conferences and other events. 3. Develop synergies between EU national health authorities for policy planning thus facilitating best practice exchanges from countries with more, to countries with less experience in the field, by actively contributing to the improvement of existing health policies at national and EU levels through the integration of the patient voice obtained via grassroot interactions. 4. Support research programmes by data collection of the unmet needs of, producing relevant informational material and participating in scientific conferences. Knowledge is our power.