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BREAKING NEW GROUND | The First-Ever Guidelines for Managing α-Thalassaemia

The Thalassaemia International Federation (TIF) is beyond excited to announce the launch of the first-ever ‘Guidelines for the Management of α-Thalassaemia’.

The Thalassaemia International Federation (TIF) is proud to present the first international-level guidelines for the management of a-thalassaemia, a comprehensive and indispensable resource for health professionals, researchers and all those involved in the care of people with α-thalassaemia.

The Guidelines come at a crucial turning point in the history of thalassaemia, where there is better understanding and more accumulated scientific data on this haemoglobinopathy, ensuring better care for people with a-thalassemia whose diagnosis, monitoring and management have been underdeveloped for years. They represent a crucial step towards improved management of the disorder and a focus on both prevention and management of its complications, which may have a small to very large impact on the health, quality of life and social inclusion of affected individuals.

Alpha thalassemia is a complex genetic and hereditary haemoglobin abnormality that presents a particularly wide range of clinical manifestations, from very mild to very severe transfusion-dependent forms. As a result, it poses major challenges in terms of its accurate and timely diagnosis, treatment and management. Unfortunately, many people with alpha thalassaemia are often not diagnosed in time, due to milder early symptoms and, sometimes, a lack of knowledge about its possible clinical outcome. As a consequence, they often seek medical attention only in advanced stages of complications.

“By offering a comprehensive overview of a-thalassaemia, this publication is a milestone in the Federation’s efforts to encourage the provision of better quality and specialised health monitoring and care to sufferers everywhere. We express our sincere gratitude to all the scientists and authors who contributed to the development of these guidelines,” notes TIF Executive Director, Dr Androulla Eleftheriou.

It is estimated that 5% of the world’s population carries a defective alpha thalassaemia gene. Approximately 1 million patients suffer from various alpha-thalassaemia syndromes worldwide, and the condition is particularly prevalent in South-East Asia, the Middle East and Mediterranean countries. In Cyprus about 20% of the population are carriers of alpha thalassaemia.

The TIF guidelines have been developed by a multidisciplinary team of internationally renowned medical experts in this field. The publication covers the genetic basis, epidemiology, clinical manifestations, diagnosis, treatment, follow-up care, and emerging therapies for alpha thalassaemia.

TIF hopes that these guidelines will be an additional valuable ally for health professionals, researchers and policy makers worldwide in the field of haemoglobinopathies and will encourage the improvement of daily clinical practice, taking into account the most up-to-date scientific evidence.

It is worth noting that the Federation is the only patient-centred organisation that compiles, publishes, translates and distributes free guidelines for all haemoglobinopathies, including beta thalassaemia, major and intermediate, and sickle cell anaemia, in support of the valuable work of the medical community worldwide.

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