TIF actively engages in the process of developing position papers on key issues which concern patients with thalassaemia, seeking to improve their quality of life and access to treatment.
Each position paper is formulated following a period of intense research and consultation with our members worldwide. Upon completion, the position papers are disseminated to key stakeholders and health authorities at the national, regional and international level with the view to implement the necessary actions to tackle the issue at hand. Furthermore, they are circulated amongst TIF’s Global Network of Health Professionals and, most importantly, they are distributed to thalassaemia associations across the world, encouraging patient advocates to develop a productive dialogue with their national health authorities, medical community, research institutes and industry, advocating for the implementation of the given position paper.
We invite you to read our Position Papers found below:
In addition to the emphasis that TIF has placed on the topic of blood in its educational programme, the Federation has prepared, published and distributed a position paper titled ‘Safeguarding blood safety’. The present position paper forms part of a collection of similar papers, which TIF regularly publishes in order to highlight and clarify its position on matters that are critical to the effective management of thalassaemia, and thus the health and quality of life of patients globally.
The Thalassaemia International Federation (TIF) representing and safeguarding the rights of patients with Haemoglobin (Hb) disorders across the world for quality health care and services, has taken the decision, in 2014, to act and react on the poor or lack of recognition of the importance of providing anti-viral treatment to patients with thalassaemia infected with Hepatitis C.
Continuous provision of updated, quality information to patients and their families particularly in the case of genetic (chronic) diseases such as thalassaemia constitutes a major objective for the existence of any patients’ orientated organisation in any part of the world.
The Thalassaemia International Federation (TIF) has focused attention for some time now and continues to do so, on the need for more strengthened and coordinated actions towards ensuring patients’ safety by protecting them against what WHO1 refers to as counterfeit medicinal products.
As a non-governmental, non-profit, patients’ organisation, the Thalassaemia International Federation (TIF) has fought for nearly three decades (since its establishment in 1986) towards the promotion of the rights of patients with thalassaemia globally, ensuring equal access to quality health care.