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Author Archives: tifwp

European Network for Rare Anaemias

TIF has played a leading role as a partner in the European Commission-funded project ENERCA (European Network for Rare and Congenital Anaemias). The project aims to bring experts together to improve public health services in the field of rare anaemias and, more particularly, to identify criteria and support national and ...

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European Patients’ Academy on Therapeutic Innovation

TIF has engaged in a project with EFGCP’s, the EU-funded European Patients’ Academy on Therapeutic Innovation’ (EUPATI). This is a patient-led academy, which will develop educational material, training courses and a public Internet library to educate patient representatives and the general public about all processes involved in medicines development. Topics ...

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Electronic Infrastructure for Thalassaemia Research Network

The ITHANET portal is a community website dedicated to thalassaemia and other haemoglobinopathies, offering a range of services including continuous updates on the upcoming conferences, interesting recent publications and talks. It also incorporates a database of organizations and networks concerned with haemoglobinopathies world-wide, and a wiki-based text interface to establish ...

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Magnetic Resonance Imaging (MRI)

Clinical care in thalassaemia major has improved dramatically over the last three decades, resulting in an impressive increase in survival rates and quality of life of patients living in countries where such clinical care is both available and affordable. However, cardiac disease still constitutes one of the most frequent and ...

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DOMAINE is a European project that aims to create a safe and sufficient blood supply, by comparing and recommending good donor management practice. From 2008 to 2011, the DOMAINE project worked on improving donor management practices throughout Europe. The two main project outcomes are the Donor Management Manual and the ...

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Alpha thalassaemia

This section is dedicated to alpha (α-) thalassaemia. THE MAJOR ALPHA (α-) THALASSAEMIAS ARE: HbH disease α-thalassaemia Hydrops Foetalis (=Hb Bart’s Hydrops Foetalis) Many diseases in humans are caused by abnormalities in the blood and these are categorized according to the component of the blood which is affected: white cell ...

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