United Kingdom Thalassaemia Society
The U.K. Thalassaemia Society has been in existence for more than 30 years and has amassed a wealth of experience in Thalassaemia not only in the U.K. but through its network and associations with other countries. The Society realised early on of the importance of a pain free alternative to Desferrioxamine which could also be afforded by those in less developed Countries. A massive programme of research was undertaken on the Society's behalf and funded directly by it which helped push the problem into the fore of medical inspiration. The research into a new drug, "Deferiprone", an oral chelator, was funded by the Society outside of the pharmaceutical industry and is now being used in the treatment of thalassaemia. The Society is now engaged in raising the Health Education of the at risk Asian Communities of the U.K. and has itself launched an extensive Awareness Project spanning three years up to July 2000. This project is designed to arm the Asian Communities of the U.K. with the same knowledge of the disease and prevention that the Mediterranean Communities received in the 1970's and the 1980's. The project has been made possible by a grant from the National Lotteries Charities Board and follows years of lobbying many interested parties including the Department (Ministry) of Health and the Health Education Authority (Non-Governmental Organization) here in the U.K. The UK Thalassaemia Society is also involved in direct Welfare of Patients and provides Counselling services to sufferers and parents alike.