The 2nd Pan-European Conference on Haemoglobinopathies is the first Europe-wide conference dedicated to the haemoglobin disorders – thalassaemia and sickle cell disease. It follows TIF’s first European Workshop on Thalassaemia held in 2007, which attracted 150 doctors and patients from across Europe and demonstrated a need for a larger-scale educational event, addressing medical professionals, patients and national and EU policy-makers and placing Hb disorders in the wider context of rare diseases.
The purpose of this 2nd Pan-European Conference is to bring together patients, medical professionals and other stakeholders from across Europe in order to share best practices on patient care, prevention and patient empowerment and to encourage European countries to recognise and address the public health burden of Hb disorders. The programme addresses all aspects of the current standards and latest developments in clinical management, as well as issues related to prevention and patient empowerment.
While abnormal Hb genes are mainly prevalent in Africa, Asia, Middle East, South America, West Pacific and around the Mediterranean, in the rest of Europe migration has introduced the genes into the populations and prevalence continues to increase. The situation varies between European countries, ranging from countries with long experience in the control (management and prevention) of Hb disorders, such as Cyprus, to those where such disorders were introduced through migration, either long-established (such as the UK) or more recent (such as northern Europe). Even where appropriate services exist, their take-up can be hampered by low awareness by patients and doctors, lacking epidemiological data, and cultural/language barriers. Sharing best practices and experiences at European level and between countries is therefore crucial for reducing the existing inequalities in patients’ access to appropriate care.
For more on thalassaemia, read About Thalassaemia
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