UK Thalassaemia Society
Area of work: Ethical Legal Social Issues
Address: 19 The Broadway, Southgate, London, N14 6PH, United Kingdom
Role in RD-Connect:
UK Thalassaemia Society is represented on the Rare Disease Patient and Ethics Council (RD-PEC).
To be the definitive source of information, education and research for those affected by or working with Thalassaemia.
The U.K. Thalassaemia Society has been in existence since 1976 and has amassed a wealth of experience in Thalassaemia not only in the U.K. but through its network and associations with other countries. It works nationally as well as internationally with other Thalassaemia patient organisations for the benefit of the global patient community.
The Society realised early on of the importance of improvement treatment options for a pain free alternatives in iron chelation 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 the UKTS which helped push the problem into the fore of medical inspiration.
It funded research into developing the first ever oral chelator, outside of the pharmaceutical industry which is now being used in the treatment of thalassaemia.
Thalassaemia is the commonest monogenic inherited condition in southern Europe and within the Asian Communities of the U.K; more than any other major racial group in the UK today. The Society has been engaged in raising the Health Education of the at risk Asian Communities of the U.K. when it 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.
For many years the society has been working hard to create awareness for patients and their families, as well as the wider community, both at a local and a national level.
Our work with the government has resulted with thalassaemia being included into the UK’s National Screening Programme and the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia.
The NHS Sickle Cell and Thalassaemia Screening Programme were set up in 2001. It is the world’s first linked antenatal and newborn screening programme. It covers England and has provided support and policy advice to the rest of the UK and internationally. It offers:
• Antenatal screening to all pregnant women early in pregnancy and, where relevant, to fathers-to-be. The aim is to identify couples at risk of having a child with a condition so that they can make informed choices.
• Newborn screening to all babies. This identifies all babies with sickle cell disease so they can receive prompt and potentially life-saving treatment. It also identifies genetic carriers of sickle cell disease.
The UKTS is represented on the Steering Group, the Public Outreach Steering Group, the Newborn Outcomes Information Group and the Laboratory Subgroup of the NHS Sickle Cell and Thalassaemia Screening Programme.
The UKTS is also represented at the high level of NHS England Commissioning Reference Group, Steering Group of the National Haemoglobinopathies Registry, and may other related professional organisations.