TIF

The Thalassaemia International Federation (TIF), an international non-governmental organisation, was founded in 1987 as a federation of national Thalassaemia support associations. By the late 1980s the success of Thalassaemia control programs, which had been implemented in some countries, had become widely known, bringing hope to what was regarded as an impossible task for public health authorities, the limitation of the effects of a hereditary disorder. These programs combined prevention and improved treatment for patients, made easier by the limitation of new affected births. In both the initiation and the implementation of these programs, a vital role was played by the Thalassaemia Associations in each of these countries. The associations consisted mostly of parents and patients, providing social support for affected families, encouraging physicians, lobbying health officials, informing the public, and contributing actively to the upgrading of treatment for example by taking a lead in promoting voluntary blood donation. There was, at the same time, a growing awareness that in most parts of the world where Thalassaemia was common, many patients were dying without even a diagnosis or because only substandard treatment was provided. If these patients were to survive programs would have to be planned and implemented, and Associations would have to play the same vital role. The experience had to be transferred and where no association existed one had to be formed because where one was lacking, the services were poor or absent. This was one motive for the formation of an international group; the other was the need to unite forces to promote research by scientists, drug companies and health authorities. The combined voice of many is more powerful than that of a few individuals pleading for their rights. Today TIF has grown to include members from 91 countries. Members are national associations, interested individuals, doctors and scientists, drug manufacturers, equipment suppliers and research centres. Moreover the World Health Organisation (WHO), has given recognition to our work by designating TIF as a Non Governmental Organisation (NGO) with which it is in “official relations”.