Τίτλος:
Hemoglobin disorders in Europe: a systematic effort of identifying and
addressing unmet needs and challenges by the Thalassemia International
Federation
Γλώσσες Τεκμηρίου:
Αγγλικά
Περίληψη:
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.
Συγγραφείς:
Angastiniotis, Michael
Cannon, Lily
Antoniou, Eleni and
Brunetta, Angelo Loris
Constantinou, George
Knoll, Eva Maria and
Loukopoulos, Dimitris
Skafi, Anton
Eleftheriou, Androulla
Περιοδικό:
THALASSEMIA REPORTS
Λέξεις-κλειδιά:
Thalassemia; sickle cell disease; hemoglobin disorders; prevalence;
migration; Europe
DOI:
10.4081/thal.2021.9803
