Haemoglobin (Hb) disorders, including thalassaemia and sickle cell anaemia, are a group of genetic blood disorders classified as rare diseases as they affect less than 1 in 2000 inhabitants of the population. Approximately 7% of the global population carry an abnormal haemoglobin gene, and more than half a million affected children are born each year. Most of these are born in the developing region of the world and a significant percentage of them die each year due to suboptimal quality treatment or a complete lack of treatment.
Rectifying this situation is the mission of the Thalassaemia International Federation (TIF) by providing equal access to quality health care. TIF is a non-profit organisation comprised of 99 member associations and others from 58 countries – in official relations with the World Health Organisation (WHO) since 1996 as well as other major health-related institutions globally. TIF is committed to improving the quality of life and life expectancy for patients with inherited congenital haemoglobinopathies, thalassaemia and sickle cell disease, through:
- supporting the activities of existing national patients’ and parents’ organizations, and establishing new ones, and;
- supporting national health authorities in their efforts to develop effective national control strategies, including prevention and clinical management.
- creating networks of medical specialists and health professionals to support its educational programmes.
For more information, visit TIF’s website: http://www.thalassaemia.org.cy/
Since 2007, TIF has focused more attention on Europe as a new priority region. Haemoglobin disorders are already contributing significantly to the national public health burden to date in almost every European country, due to the migration of populations from affected regions of the world. Already in some countries, the population is at the 4th or 5th generation of immigrants who are patients of such haemoglobin disorders.
Education of patients/parents and health specialists, and raising awareness about these diseases to the community at large, constitute the core of TIF’s educational activities. These include the organisation of conferences, workshops and seminars – at the local, national, regional and international level, as well as publication, translation and distribution of an extensive range of educational materials and books which constitute to-date the reference material for these disorders. A selection of these can be found on TIF’s website.
TIF’s largest and longest-established international event for medical professionals, scientists, patients and parents are the biennial International Conferences, which attract more than a thousand delegates from all corners of the world. TIF has had impressive results over the years with regards to the impact these conferences have had on raising the awareness and educating both health professionals, and patients and parents.
The upcoming one, the 12th International Conference on Thalassaemia and Hemoglobinopathies and the 14th TIF International Conference for Patients and Parents, will take place next year 2011 in Antalya, Turkey. This event, combining two simultaneous conferences, aims to provide the latest scientific and medical updates to health professionals, patients and their families as well as to support the exchange of knowledge and experiences. Above all and these conferences serve as great opportunity to built up new and strengthening existing relations and collaborations.
For more information, visit the website of the conference: www.tif2011.org
In addition, a new component of TIF’s educational programme is the creation of an e-MSc course in Haemoglobinopathy- the only postgraduate course in this field. More information will be provided in the next blog.
In closing, I would like to underscore that today although thalassaemia is a chronic multi-organ severe disease of the blood, it can be both effectively prevented and managed, and hopes are high that in the future it will be curable. With the right treatment, patients with thalassaemia can live a full and productive life, have careers and families of their own, and achieve their individual aspirations. This is the vision of the Thalassaemia International Federation. UNITY IS OUR STRENGTH – KNOWLEDGE IS OUR POWER.
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