TIF was invited by the Turkish Thalassaemia Federation (TFT) and by its president Mr Burhan Kerimoğlu, as well as the lead of its scientific advisory panel, Prof Yesim Aydinok, to participate in the Turkish Thalassaemia Conference on the 31st of March 2016. TIF was represented by its medical advisor, Dr Michael Angastiniotis, and Mr Ahmed Varoğlu. This visit gave the opportunity for TIF delegates to meet and be updated by the representatives of the TFT on their issues of concern.
It became apparent through discussions in the context of this visit, also through other collaborations that TIF has had with the TFT in the past, that patients in Turkey need considerable reinforcement in terms of
acquiring knowledge of their disease and of new advances. In addition, in some regions of the country, patients face difficulties in accessing health services, and in order to have a clearer picture of the situation pertaining to health care services, more detailed information is needed. In this context, it was mutually decided that TIF would develop a questionnaire for patients/parents with a view to obtaining more detailed information in collaboration with TFTs scientific advisory board. The information collected will be analysed with a view towards producing a charter of priorities to be used by TFT as an advocating tool to work more productively with the health authorities at the local and national level, in order to instigate further improvements regarding health care services for thalassaemia patients.
During 2016 the TIF “Guidelines for the clinical management of transfusion dependent thalassaemia”, was translated, and printed, in the Turkish language. The main next project for Turkey is the organisation of a patient education programme, and the request by the Federation for translation of the TIF platform and for the organisation of patient workshops.
Turkey is a country of 77 million people. The registered patient population: Thalassaemia 5500 and 4300 SCD patients (total 9.800). The overall carrier rate of beta thalassaemia is estimated at 2.2% of the population and 0.44% of sickle cell, with many regional variations. Large patient concentrations are in Hatay district, which has 2.100 patients. In Urfa (south Eastern Turkey) there are 600 patients but the numbers have been increased by the influx of at least 170 Syrian refugees. Patients, affiliated to the Turkish Thalassaemia Federation, have expressed concerns mainly that the quality of patient care is not equal in all districts or centres. TIF often attends the Conferences organised by the Federation.