The radical improvements in prevention and management of β-thalassaemia major that have been taking place in the last three decades, primarily in the West, have led to a significant increase in the survival rate of patients with β-thalassaemia major in countries. However, life without complications, ensuring better quality of life, have not yet been achieved. One of the main causes is patients’ insufficient education about the disease and compliance with prevention and treatments.
This section specifically addresses thalassaemia patients providing material and ways in which thalassaemia patients can listen to fellow patients’ stories, learn more about the disease, and participate in awareness-raising activities through videos, photos and stories.
The Thalassaemia Patients Connect project offers an open and direct channel of communication for patients who seek to learn more about thalassaemia.
The Thal e-course, part of TIF’s Expert Patients programme, offers interactive interactive learning opportunities for patients to learn and test their new knowledge on thalassaemia.