The steady rise in the number of patients and carriers with thalassaemia in Europe, as well as the challenges it entails both for the health systems of EU countries and the optimal care of patients with the disorder, were highlighted in the Press Conference for the conclusion of the Thalassemia in Action (THALIA) project, held on December 20, at the Thalassaemia International Federation (TIF) Headquarters in Nicosia, Cyprus.
“Although thalassemia has always been endemic in Europe, especially in southern European countries such as Cyprus, Greece and Italy, the disease now knows no borders and constitutes an increasing health, medical and socio-economic challenge for Europe,” said TIF’s Executive Director, Dr. Androulla Eleftheriou.
Indeed, migration flows over the past ten years of people from areas with a high prevalence of thalassaemia (e.g. Iraq, Syria, Afghanistan, etc.) towards Europe, have ‘introduced’ this inherited blood disorder in countries such as Sweden or Germany, where until now it was extremely rare or even non-existent. Based on the available data, it is estimated that patients with β-thalassaemia major, the most serious form of the disease, reach up to 30,000 in Europe, whilst thalassaemia carriers now exceed 700,000, although “due to the lack of official national patient and carriers registries in most European countries, these numbers are probably much higher,” stated TIF’s Medical Advisor, Dr. Michael Angastiniotis.
The absence of national patient registries and of national programmes for thalassaemia prevention and management in the majority of EU Member States, but also the limited expertise of healthcare professionals in terms of timely diagnosis and appropriate management of the disease, due to the rarity of hemoglobinopathies in the indigenous population of most EU countries, continue to be some of the most complex challenges European health systems are up against.
Through the THALIA project, TIF proceeded to the implementation of carefully planned actions and activities with emphasis on:
- raising public awareness about the “migration” of thalassaemia in Europe,
- educating patients/parents and healthcare professionals, through e-learning courses, webinars, scholarships, mobile tools (THALIA app),
- strengthening networking and collaboration between patients, and
- promoting haemoglobinopathies’ research at the European level.
The Federation has also formulated a series of recommendations for the development of specialized policies for the effective prevention and management of thalassaemia.
During the Conference, TIF’s President, Mr Panos Englezos, delivered the TIF recommendations to the Head of the European Commission’s Representation in Cyprus, Ms Myrto Zambarta.
It is worth noting that TIF was the first international, Cyprus-based, non-profit organization in the field of health to conclude a formal cooperation agreement with the European Commission, in recognition of the great importance of the Federation’s work for EU Member States.