Thalassaemia International Federation | A non-profit, non-governmental patient-driven organization, founded in 1986

The need for optimum and quality care for haemoglobin disorders is well established if the aim is to achieve long survival and good quality of life. To achieve this aim in dealing with a multi-organ pathology as encountered in thalassaemia, a coordinated multidisciplinary team of specialists is required. Such a team must include an endocrinologist , preferably experienced in the management of hormonal deficiencies caused early in life by transfusional iron overload. Endocrine complications are very common in multi-transfused thalassaemia patients. In a recent review of the literature (2nd Pan - European Conference on Haemoglobinopathies, Berlin 2010) by Prof Vincenzo de Sanctis of Ferrara, Italy, the following table was presented:

These results are indicative of the high prevalence of complications and the need of expert monitoring and management by a specialised physician. Despite this in a recent survey conducted by TIF for the Enerca project (European Rare Anaemias), of 316 regularly transfused patients across Europe, only 177 (56%) are seen by an endocrinologist at all. Of these 134 (42%) are seen at least annually, while the rest seem to be followed occasionally (every 2 years or more).

In a similar survey conducted by TIF in the Middle East (2009), of 90 health professionals who look after thalassaemia patients from various countries in the region, 86.4% reported a lack of multi-disciplinary support. Of 96 multi-transfused patients from the same region, 62.4% stated that they had never visited an endocrinologist, 3.6% were seen occasionally (every 2 years or more) while 34% were seen at least yearly. All patients who responded were over 10 years of age.

There is a clear need to encourage endocrinological follow up of multi-transfused patients and to train more endocrinologists and attract them to this interesting and important field. There is also room for collaborative research, especially since both epidemiological data and clinical are based on relatively small numbers of patients.

TIF in recognition of this need has collaborated with experts in the field to form an international network to promote recruitment and training of endocrinologists for thalassaemia, to educate through workshops and other means and also to promote collaborative research.

The team of doctors who have taken the initiative and have formed the initial core group include endocrinologists Prof Vincenzo de Sanctis and Dr Giusseppe Raiola (Italy), Dr Nikos Skordis (Cyprus), Dr Ashraf Soliman (Qatar). In addition doctors experienced in thalassaemia care are supporting the group. These include Prof Christos Kattamis (Greece), Dr MR Gamberini and Dr Maria Galati (Italy), Prof Duran Canatan and Dr Yurdanur Kilinç (Turkey) and Dr Michael Angastiniotis (TIF).

The TIF Board of Directors has pledged full support to this initiative under the supervision of the Executive Director Dr Androulla Eleftheriou.

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