Greek Thalassaemia Federation (EOTHA)

Description

Greek Thalassaemia Federation (E.O.THA.) was founded in 1991 and is the national union of people with Thalassaemia (Mediterranean anaemia, Cooley' s anaemia) and Sickle Cell Disease, in Greece. It brings together the 26 local Thalassaemia Associations of the country and represents 5,000 patients and their families. It is a member of Thalassaemia International Federation (TIF), and of Greek Confederation of People with Disabilities (ESAmeA). It is a non-profit organisation aiming at the improvement of health services provided to the patients, vocational rehabilitation and social integration, fighting against marginalisation. • Solidarity and coordination between its associations-members is one of the main goals in order to better tackle Thalassaemia, and Sickle Cell Disease and seek solutions for every patient’s problem. We also aim to: • Promote Thalassaemia treatment according to the international protocols. Promote prevention, treatment and cure of Thalassaemia; create Thalassaemia treatment centres in all Greek hospitals. • Promote, coordinate and enhance research projects related to Thalassaemia and its complications. • Promote Voluntary Blood Donation, following international regulations. As you probably know, Thalassaemia and Sickle cell disease are hereditary disorders and a cure does not currently exist. Gene therapy is a potential cure and a pilot project is already being applied in Thessaloniki, to which results we all look forward. Thalassaemia treatment consists of regular transfusions every 15 days and additional medication to prevent iron overload in the vital organs due to these transfusions. Iron overload is the leading cause of death for those unable to manage their treatment. The conditions for Thalassaemia have changed radically during the last decades because of the new chelation treatments, resulting in happier patients with an almost normal life, education, jobs and their own families. All of these changes of course were achieved due to persistent and arduous efforts of all thalassaemic people, concerning not only treatment issues but also combating the social stigma. Greek Thalassaemia Federation along with the 26 Thalassaemia Associations in Greece go through a constant struggle to put forward everyday problems such as lack of blood donations, bureaucracy, social integration, employment, research, medical information, social information and awareness. More specifically: • Organizes medical conferences updating thallasaemics all over Greece on new data about treatments and therapies. • Organizes educational workshops for members. • Takes part in thalassaemia international conferences. • Promotes the concept of voluntary blood donation through the publication and circulation of leaflets, TV/radio spots, issuing press releases about the lack of blood. • Participates in television or radio interviews to inform and raise awareness on thalassaemia implications and its prevention, etc.

Organisation's Type

Patient Society