United Kingdom Thalassaemia Society

United Kingdom Thalassaemia Society

At a glance

Causes

  • Education
  • Health and well being / research and care
  • Social care
  • Voluntary sector support
  • Women
  • Young people

Other details

Organisation type: 
Charity
Geographical remit: 
National - England

Objectives

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.

Activities

  • NHS SC&T Screening Programme– working closely with the Sickle Cell Society in raising awareness and doing outreach for people of high/low risk of haemoglobinopathies.
  • Funded the development of the chelation syringe driver in 1977.
  • Development and set up of the first ever Pre Natal-Diagnosis screening, in 1979.
  • Investing in the development of the oral chelator, Deferiprone funded and supported directly by the UKTS.
  • Supporting the development of an in-utero approach for thalassaemia gene therapy.
  • Development of the National Standards for The Clinical Care of Children and Adults with Beta Thalassaemia in 2005, 2008, 2016
  • Research into prevalence, transmission and treatment of Hepatitis C.
  • Partner/stakeholder in the creation of a QoL Survey for European Network of Rare Anaemias (ENERCA)

Contributing stakeholders and expertise to following European Projects:

  • ITHANET, International thalassaemia Network, a two-year (2006-2008) project funded by the European Union FP6.
  • European Network for Rare and Congenital Anaemias (ENERCA). EU Project funded by the European Commission. Creation of a QoL survey for the entire network.
  • THALAssaemia MOdular Stratification System for personalized therapy of beta-thalassaemia (THALAMOSS), funded by EU's FP7-HEALTH-2012-INNOVATION-1.
  • The DEEP project funded by the European Union's 7th Framework Programme.
  • Funding for thalassaemia patients’ register.
  • Comprehensive record in organizing targeted workshops and conferences for doctors and patients every year.
  • Commissioning research to study psychosocial issues and impacts affecting the transition from childhood to adulthood of adolescents
  • Development and implementation of a 3-year North England Awareness Project in association with the NHS SC&T Screening Programme for outreach and community work.
  • Funding research into prognostic value of MRI imaging.
  • Partner in the NHS Blood and Transplant Service.
  • Partner/stakeholder in the Peer reviews of Haemoglobinopathy centres also in collaboration with Sickle Cell Society.
  • Funded research into liver fibrosis. 
  • Funding research on bone disease treatments.
  • Created, funded and hosted the first ever all specialty meeting to talk about difficult to treat blood transfusion reaction cases.
  • A working partnership with the Department for Work and Pensions- to develop training and teaching material for their assessors of social care/ disability funding /thalassaemia rights.
  • Advocating for the rights of patients infected by HCV as core participants in the national Infected Blood inquiry.

The society also has a high-level participation nationally and internationally as:

  • Founding and long-term Board Member of TIF with 2 seats on the Board. UKTS regularly provide patient resources and expertise in missions around the world to support patients in the developing and developed world.
  • Founding Members of the Sickle Cell and Thalassaemia All Parliamentary Party Group of parliamentarians from all the affected communities. Political advocacy in UK parliament. 
  • A Member of EURORDIS (Maladies Rares).
  • Founding and Board Member of the Forum of Haemoglobinopathies (HbOs), a professional body of clinicians and nurses.

Current opportunities

London (North), N14 6PH

We are searching for a volunteer to provide expertise in charity law for our newly established charity (CIO status). As an expert volunteer, you...

London (North), N14 6PH

We are hoping to publish a report on issues being faced by people living with thalassaemia major, an inherited and severe blood disorder.  this...

Support needed for fundraising and bid writing for a small charity