| Summary: | α-Thalassaemia is a complex genetic and hereditary haemoglobinopathy characterized by a wide range of clinical presentations and as such poses significant challenges in its timely and accurate diagnosis, treatment, and patient management. Quite often, individuals with α-thalassaemia, based on their early years' milder clinical manifestations and absence or very confined awareness regarding their haemoglobin disorder, remain undiagnosed and very randomly monitored, if at all, and reach out to clinical centres and haematologists at rather advanced stages of medical complications. This is an invaluable contribution to the efforts of healthcare professionals to upgrade patient care of individuals with the so-called Non-Transfusion Dependent α-Thalassaemia. Despite the huge advances in the molecular and genetic understanding of this syndrome leading to improvements in early diagnosis, the value of systematic follow-up and prompt management of developed complications has been severely underestimated for decades to-date. In the absence of registries, particularly those that include the incidence of α-thalassaemia and its contribution to the national and international disease burden, quality of life and social integration of patients is still largely unknown
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