Abstract
Many international organizations are struggling today to coordinate limited economic and human resources in support of governments’ efforts to advance public health around the world. The United Nations and the World Health Organization, along with others play a pivotal role in this global effort. Furthermore, during the past few decades an increasingly higher percentage of global efforts on public health are carried out by specific health initiatives, international projects and non-governmental patient-oriented organizations. The Thalassemia International Federation (TIF) is one such organization focusing on the control of thalassemia around the world. The current paper aims at presenting a comprehensive overview of the mission, goals, objectives and activities of this organization. Our ultimate goal is to highlight TIF’s public health paradigm and diffuse its success at an international levels for others to follow. TIF is devoted to disseminating information, knowledge, experience and best practices around the world to empower patients with thalassemia and their relatives, support health professionals providing care to such patients and promote national and international policies, which secure equal access to quality care for all patients with thalassemia.
Highlights
An important global health issue, hemoglobinopathies are the commonest single gene disorders among all clinically important hereditary disorders around the world.[1,2] Thalassemias, the most important of which are the a- and b-thalassemias, have received particular attention in the past decades and continue to attract strong interest from clinicians, public health professionals and policy makersThalassemia constituted a grave problem in the past, and was most prevalent in countries where malaria was formerly prevalent or still remains a health issue, as a result of the genetic advantage of the carriers over the malaria infection
The e Thalassemia International Federation (TIF) is m one such organization focusing on the control of thalassemia around the world
TIF supports other project-oriented webe sites such as ITHANET and ENERCA. m Advocacy work m TIF advocacy work is mainly focused on undertaking Delegation visits and field trips in o different countries around the world in order c to investigate the prevailing situation with n regards to prevention and control programs for hemoglobin disorders, and build official neto works and collaborations with the health N authorities, policy makers, the medical compolicy makers and other scientists and lay people acknowledging the multidisciplinary approach for the management of these disorders including the active involvement of patients and their families
Summary
An important global health issue, hemoglobinopathies are the commonest single gene disorders among all clinically important hereditary disorders around the world.[1,2] Thalassemias, the most important of which are the a- and b-thalassemias, have received particular attention in the past decades and continue to attract strong interest from clinicians, public health professionals and policy makers. Working Group on the Community Control of e Hereditary Anemias chaired by one of us (DJW) in 1982.13 This meeting was attended by m many of those who had been involved in develm oping the field including Antonio Cao, Bernadette Modell, Prawase Wasi, Dimitris o Loukopoulos and many others At this meeting, c as well as summarizing progress in prevention and management of the thalassemias and n related diseases, the importance of its social o issues relating to better support N and education for families and the potential mental patient-driven organization. Greece, Cyprus, and the USA met in Milan, Italy to discuss the possibility of collaboration for this global issue It was during this meeting that a strong urge to support patients with thalassemia around the world was strongly expressed and the birth of TIF; an international patients/parents organization serving as an official body to ensure the rights of patients for quality health care while Figure 2. In the context of the above described goals and objectives, TIF has developed many different programs and services and has experienced many successes over the past 25 years of its operation
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