[Thalassemia Reports 2011; 1(s2):e4] [page 9] Thalassemia Reports 2011; volume 1(s2):e4 Abstract Thalassemia and abnormal haemoglobins are a serious health prob- lem in Turkey. Very important steps for toward preventing thalassemia have been taken in Turkey by Ministry of Health (MOH), Turkish National Haemoglobinopathy Council (TNHC) and Thalassemia Federation of Turkey (TFT) since 2000. In 1993, a law was issued called Fight Against Hereditary Blood Disease especially for thalassemia and haemoglobinopathies. The law commends to prevent haemoglo- binopathies and to treat all patients with haemoglobinopathy and tha- lassemia. A pilot project was started and centres were created in the MOH Hospitals in the southern provinces of Turkey. In 2000, TNHC was installed to combine all centres, foundations, and associations into one organization controlled by the MOH. In 2001, the MOH and the TNHC made an inventory of all recorded patients with thalassemia and abnormal hemoglobins in Turkey, registering at least 4513 patients. In 2002, written regulations for the Fight Against Hereditary Blood Disease were published. MOH and TNHC selected 33 provinces situated in the Thrace, Marmara, Aegean, Mediterranean and South Eastern regions with high birth prevalence of severe haemoglo- binopathies. In 2003, the haemoglobinopathy scientific committee was set-up, a guidebook was published and a national Hemoglobinopaty Prevention Program (HPP) was started in these high risk provinces . This program is running in these provinces successfully. In 2005, TFT was established as a secular society organization instead of TNHC. In 2007, National Thalassemia Prevention Campaign (NTPC) was organ- ized for public education by TFT. This campaign contributed very important supporting to HPP in Turkey, because totally 62.682 people such as health workers, students, teachers, demarches, religion offi- cers and the other many people were educated for preventing tha- lassemia and haemoglobinopathies. In 2009, National Thalassemia Education Seminars (NTES) for health personnel have been planned in 26 cities by MOH and TFT. A total 3.600 health persons were educat- ed on thalassemia prevention and therapy with NTES in 18 centres in 2009 and 2010. In conclusion, according to reports of MOH, 46 first level haemoglobinopathy diagnosis centres, 5 second level diagnosis and therapy centre and 5 third level prenatal diagnosis centre were set- up and licenced in 30 cities between 2003 and 2009. While premarital screening tests were 30% of all couples in 2003, it increased continu- ously during 6 years and it reached 81% in 2008. The number of new born with thalassemias and hemoglobinopathies was 272 in 2002, it was decreased to 23 in 2008, as a result there has been an 90% reduc- tion in new affected births. Background In 1958, the first clinical and hematological studies on thalassemia and haemoglobinopathies in Turkey was published by Aksoy et al [1]. In 1971, Çavdar and Arcasoy reported that overall incidence of β-tha- lassemia in Turkey was 2.1%. 2 In 1983, first prenatal diagnostic proce- dures for identifying haemoglobinopathies were performed by Altay et al. 3 In 1987, Akar et al. showed that the most frequent thalassaemia allele in the Turkish population was the IVS-1 nt 110 mutation, which was the most common thalassaemia mutation in the majority of the high risk regions of the Mediterranean area. 4 In 1992, Başak et al. reported the spectrum of β-thalassemia mutations occuring in the Turkish population. 5 In 1993, a law was issued called Fight Against Hereditary Blood Disease a pilot Project was started and centres for Research and Treatment for Hereditary Blood Disease were created in the Ministry of Health (MOH) Hospitals in the south provinces of Turkey, Antalya, Antakya, Mersin, Mugla regions. In 2000, Turkish National Hemoglobinopathy Council (TNHC) was installed to combine all centres, foundations and associations into one organization con- trolled by the MOH. In 2001, the MOH and the TNHC made an invento- ry of all recorded patients with thalassemia and abnormal haemoglo- bins in Turkey. 6-8 In 2002, Altay published that screening studies for abnormal haemoglobins and β-thalassemia during the last 40 years. These studies revealed most common abnormal haemoglobin was HbS followed by Hb D, HbE, and Hb O Arab. In addition 42 abnormal haemo- globins were identified in Turkish population. 9 In 2002, written regu- lations for the Fight Against Hereditary Blood Disease (FAHBD) were published. MOH and TNHC selected 33 provinces situated in the Thrace, Marmara, Aegean, Mediterranean and South Eastern regions with high birth prevalence of severe haemoglobinopathies. Haemoglobinopaty Prevention Program (HPP) was started in these high risk provinces on the 8th of May, 2003. 6-8 The aims of HPP are following up: i) to assess the present situation in each region by recording patients and carrier, ii) to produce a Correspondence: D. Canatan, MD, President of Thalassemia Federation of Turkey, President of Akdeniz Kan Hastaliklari Vakfi, Antalya, Turkey. Tel./Fax: +90.242. 2432020-21. E-mail: dcanatan@superonline.com www.talasemifederasyonu.org.tr - www.akhav.org.tr Key words: haemoglobinopathy prevention program, Turkey. ©Copyright D. Canatan, 2011 Licensee PAGEPress, Italy Thalassemia Reports 2011; 1(s2):e4 doi:10.4081/thal.2011.s2.e4 This article is distributed under the terms of the Creative Commons Attribution Noncommercial License (by-nc 3.0) which permits any noncom- mercial use, distribution, and reproduction in any medium, provided the orig- inal author(s) and source are credited. Parts of this work were presented at the “12th International Conference on Thalassemia and Hemoglobinopathies”, Antalya (Turkey), 11-14 May 2011. Haemoglobinopathy prevention program in Turkey D. Canatan President of Thalassemia Federation of Turkey, President of Akdeniz Kan Hastaliklari Vakfi Antalya, Turkey Non-commercial use only