Pillars of Work
The work of the Federation in addressing effectively the needs of the world thalassaemia family & achieving its mission has been based on 5 pillars:
- The establishment of new and promotion of existing National Thalassaemia Patient/Parents Associations, across the world, aiming to transform patients and parents into knowledgeable, productive and equal partners in the fight to achieve progress through education and building their capacities and competences.
- The development and continuous updating and upgrading of an Educational Programme, based on four components:
organisation of educational events at the national, regional and international level;- organisation of educational events in the course of delegation visits;
- preparation, publication, translation and distribution of educational/awareness-raising/community material;
- promotion of academic courses/fellowship preceptorships.
- Collaborations/Networks/Partnerships with National Health Authorities and other relevant health-related institutions or medical/scientific associations or other disease-specific other than thalassaemia, at the national, European and international level.
- The undertaking of, or contribution to Projects that aim to further improve existing policies or develop innovative ones, as well as expressing its position through the development and promotion of position papers on critical issues and topics relevant to the quality of health, other care, life and safety of the patients.
- Supporting and contributing to Research and scientific programmes for the further improvement of existing and the development of new treatment procedures, and aiming towards the final cure.
