International role


Thalassaemia without borders. The charity has a high-level of participation internationally in the field of thalassaemia:

  • Our capabilities are driven by the need to address many of the world’s most pressing issues affecting thalassaemia.  We intend to keep working until everyone living with thalassaemia can access gold standard care and live their lives without limits.
  • We provide research based evidence and advice across the world to support the management of thalassaemia and advocate for the rights of individuals living with thalassaemia.
  • Our global work is characterised by engagement and collaboration with UK and international patients, patient societies, health care professionals, government, universities, scientific institutions, businesses and industry.
  • We have visited many countries such as Nepal, Iraq, Kurdistan etc to meet with government representatives and health professionals to discuss ways in which healthcare accessibility and provision for patients with thalassaemia can be improved. 
  • We are founding members of the Thalassaemia International Federation (TIF) and previously held seats on the Board of Directors.
  • We are also an active member of EURORDIS, European Network for Rare and Congenital Anaemias (ENERCA) and the international Rare Diseases Search Consortium (iRDiRC). Our international connections with these organisations help to advance awareness and research into thalassaemia and other rare anaemias and share knowledge and expertise across international borders.