United Kingdom Thalassaemia Society

The United Kingdom Thalassaemia Society (UKTS) is one of the oldest patient organisations in the thalassaemia community having just celebrated their 41st anniversary as a registered charity in the United Kingdom. The society is run entirely by non-paid volunteers with a Board of Trustees of only patients or parents. Their Operations Manager is a parent of a patient herself and a previous Trustee. Over the years the society has amassed a wealth of experience in Thalassaemia not only in the United Kingdom but through its network and associations with other countries. Brief background: From the onset, it was left to a group of parents coming together to try and lobby government, hospitals and specialists towards development of a structured treatment regime for patients suffering with the disorder.  This was no easy feat as they had to overcome the challenges of being told that their children would not live to become teenagers and that there was no hope for the many parents searching for a solution.  One of the first major achievements for the parents, once the society was formed, was to finance the development of the syringe driver pump, used to administer deferoxamine an iron chelator drug, needed to remove excess iron storage from the body. The money for this research was initially funded from second mortgages taken against some of the parents’ homes.  Another major achievement was the funding raised to finance further research for oral iron chelator, a less painful option, to assist with patients’ adherence.  It was extremely important to find a pain free alternative to Deferoxamine 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 has also been engaged in involved in awareness campaigns which has been extended to the many other communities affected, armed 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 recognised throughout the National Health Service (NHS) and the Health Education Authority (Non-Governmental Organisation) here in the U.K. and in some instances, we have been partnering some of the national bodies towards educating the population and preventing new births. The UK Thalassaemia Society is also involved in direct Welfare of Patients and provides Counselling services to sufferers and parents alike.  Over the past 41 years the UKTS has donated more than £2 million pounds to research. Although all the projects are important, the society try to fund those that stand out head and shoulders above the rest, and that can help change the lives of thalassaemics nationally as well as internationally.