Our Mission. We aim to:
- Promote awareness about thalassaemia, its prevention, medical and other care
- Promote and support studies and research for the continuous improvement of prevention and clinical care strategies and for achieving the total cure of thalassaemia
- Disseminate the knowledge, experience and expertise gained from countries with successful control programmes to those in need
- Attain the right of every patient to equal access to quality medical care
We hope to achieve this through:
- Establishment of new National Patient Associations and promotion of existing ones
- Organisation of delegation visits and field trips to affected countries
- Coordination of and participation in national, European and international projects in the field of public health and more specifically thalassaemia and other haemoglobinopathies, focused on improving the epidemiology, medical and other care, social integration and quality of life of patients, as well as the knowledge of health professionals, patients and parents about the disease, its prevention and treatment, awareness on patients' rights, and the safety and adequacy of blood.
- Development of an educational programme for health professionals in the field, patients, parents and the community at large through the organisation of workshops, conferences, seminars and meetings at local, national, European and international levels, and the preparation, publication, translation and free distribution of educational and awareness material
- Development of a network of collaboration with national, European and international medical and scientific communities; research institutes and medical centres of excellence; health-related bodies and organisations; pharmaceutical companies; thalassaemia and other disease-specific patient organisations