About the Thalassaemia International Federation
The Thalassaemia International Federation (TIF) is a non-profit, non-governmental organisation founded in 1986 by a small group of patients and parents representing mainly National Thalassaemia Associations in Cyprus, Greece, UK, USA and Italy; i.e. countries where thalassaemia was first recognised as an important public health issue and where the first national programmes for its control, including prevention and clinical management, had begun to be promoted and implemented. TIF was officially registered under Cyprus Company Law in 1987, and since 1996 it has worked in official relations with the World Health Organisation (WHO).
In addition, through the years, TIF has established collaborations and networks with a number of other official health orientated agencies and associations, and patient orientated organizations at the national, regional and international level. Today, TIF (www.thalassaemia.org.cy) has evolved into an umbrella federation, with 118 member associations, in 57 countries of the world, safeguarding the rights of patients to quality health and other care.
Find out more on our website, www.thalassaemia.org.cy
PILLARS OF WORK
The work of the Federation in addressing effectively the needs of the world thalassaemia family and achieving its mission has been based on five 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.