Title |
Haemoglobinopathies in Europe: health & migration policy perspectives
|
---|---|
Published in |
Orphanet Journal of Rare Diseases, July 2014
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DOI | 10.1186/1750-1172-9-97 |
Pubmed ID | |
Authors |
Patricia Aguilar Martinez, Michael Angastiniotis, Androulla Eleftheriou, Beatrice Gulbis, Maria Del Mar Mañú Pereira, Roumyana Petrova-Benedict, Joan-Lluis Vives Corrons |
Abstract |
Major haemoglobinopathies (MH), such as thalassaemia syndromes (Thal) and sickle cell disorders (SCD), are genetic defects associated with chronic anaemia and other complications. In Europe, MH are rare diseases (RD) but their prevalence is significantly growing in many countries due to mobility and migration flows. This creates a growing health problem in the EU that has not yet been effectively addressed by Member States (MS) authorities. The present study has been conducted with the aim of: (i) providing an overview of policies for MH in 10 EU member states (MS) (ii) analysing the challenges linked to these RD due to growing requirements imposed by population, mobility and migration trends and (iii) identifying gaps, proposing improvements on existing policies, or developing new ones to fit the identified needs. |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Indonesia | 1 | <1% |
United States | 1 | <1% |
Unknown | 128 | 98% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 15 | 12% |
Researcher | 15 | 12% |
Student > Bachelor | 15 | 12% |
Student > Doctoral Student | 11 | 8% |
Student > Ph. D. Student | 10 | 8% |
Other | 21 | 16% |
Unknown | 43 | 33% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 37 | 28% |
Biochemistry, Genetics and Molecular Biology | 12 | 9% |
Nursing and Health Professions | 10 | 8% |
Agricultural and Biological Sciences | 9 | 7% |
Social Sciences | 4 | 3% |
Other | 11 | 8% |
Unknown | 47 | 36% |