Abstract
Hemoglobin disorders (thalassemia and sickle cell disease) are a group of hereditary anemias that today occur across the world. The recent population movement has led to a steady increase of carriers and patients in all countries of the European Union. Requiring complex monitoring and treatment and, as a consequence, well-organized and nationally coordinated, supported and funded services, these lifelong conditions are now visible to healthcare services in the EU. The purpose of this study is to provide an overview of the current situation pertaining to these disorders, as perceived by the patient/parent community that the Thalassemia International Federation (TIF) represents. The aim is to establish a comprehensive understanding of the situation and unmet needs faced by migrants with thalassemia. The implementation of activities by TIF in 2018–2020 to identify and address these challenges, paves the way to increased awareness, education and policy changes building on international expertise and knowledge that will enable the provision of state-of-art clinical management services thus guaranteeing an improved quality of life. A bird’s eye view of the prevalence of these disorders is presented contributing to the further understanding of challenges met by both patients and healthcare professionals in the receipt and provision of quality healthcare respectively.
Highlights
Hemoglobin disorders are a group of hereditary anemias caused by genetic mutations affecting the production of the globin chains of the hemoglobin molecule
Kapodistrian, University of Athens Medical School and Biomedical ly Research Foundation of the Academy of Athens, Athens, Greece on Abstract se Hemoglobin disorders are a group of hereditary anemias that today occur across the world
The purpose of this study is to provide o an overview of the current situation pertainc ing to these disorders, as perceived by the - patient/parent community that the n Thalassemia International Federation (TIF) o represents
Summary
Hemoglobin disorders are a group of hereditary anemias caused by genetic mutations affecting the production of the globin chains of the hemoglobin molecule. The increas- ment of an EU-wide comprehensive dis- Federation; 2020 - undergoing peer ing numbers of patients together with inten- ease-specific Registry is pivotal for moni- review).[16] sified population migrations from high toring the spread of hemoglobin prevalence countries today make disorders in each country but as a health Services for hemoglobin disorders hemoglobin disorders ‘visible’ to the health planning tool that informs national policy These lifelong conditions require comservices of countries which previously regarded them as extremely rare, having brought new challenges to European health services.[5] Persons born outside Europe are generally increasing in Europe, but in the context of hemoglobin disorders, it is those migrants that have arrived more recently (after 2012) from high prevalence countries, that are the focus of this study. No of accepted migrants from Estimate of the patient high prevalence SCD areas population (indigenous and migrant) ia Austria
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