Challenges and gaps linked to haemoglobinopathies in Europe

ENERCA provides in Orphanet Journal of Rare Diseases an overview of policies in 10 European countries

July 15, 2014

Through mobility and migration flows, haemoglobinopathies have spread from the Mediterranean, Africa and Asia to the whole Europe, the Americas and Australia. With the aim of providing an overview of policies for Major Haemoglobinopathies in 10 European Union member states and analysing the challenges and gaps linked to these rare diseases, members of the ENERCA joined efforts in an article published in Orphanet Journal of Rare Diseases

The work, which included authors from CHU de Montpellier - Saint Eloi Hôpital (France), Thalassaemia International Federation (TIF) (Cyprus), Hôpital Université Libre de Bruxelles (Belgium), IDIBAPS - Hospital Clínic - University of Barcelona (Spain) and International Organization for Migration (IOM) (Belgium), was based on desk research and performing interviews using a structured questionnaire. 

Major Haemoglobinopathies are rare genetic blood disorders that affect more than 330,000 newborns every year worldwide (70% sickle cell disease and the rest severe forms of Thalassaemia). These disorders are endemic in the Mediterranean, African and Asian regions and are currently the most common rare diseases of genetic origin in Europe. If untreated, patients with thalassaemia major usually die during childhood or before adolescence. Patients with sickle cell disease suffer from chronic or acute anaemia due to increased haemolysis, but also from adverse events related to hyperviscosity and vaso-occlusion.

In countries with existing standards of care and where management guidelines have been implemented and well adhered to by patients, the rate of survival and quality of life has significantly increased. However, current and future mobility and migration flows to and within regions including the European Union, pose considerable new challenges that have to be taken into consideration by members states and European authorities.

The present work supports the recently published policy report which, for the first time, placed a spotlight on the different policies and practices of ten EU countries. The document, entitled “Haemoglobinopathies on the Move: Is Europe ready?”, was intended to encourage policy makers across Europe to address the current gaps in the management of haemoglobin disorders.


Article reference:

Patricia Aguilar Martinez, Michael Angastiniotis, Androulla Eleftheriou, Beatrice Gulbis, Maria Del Mañú Pereira, Roumyana Petrova-Benedict, Joan-Lluis Vives Corrons. Haemoglobinopathies in Europe: health & migration policy perspectives. Orphanet Journal of Rare Diseases 2014, 9:97. doi:10.1186/1750-1172-9-97. 


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