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 view of the plans made by national health authorities in every country across the world for the widespread vaccination of individuals against the SARS-CoV-2 virus, TIF herein presents the Federation’s position about the vaccination of patients with haemoglobin disorders against SARS-CoV-2.
Many patients with haemoglobinopathies, including thalassaemia and sickle cell disease, are at increased risk of developing severe complications from the coronavirus disease 2019 (COVID‐19). In this Position Statement, TIF reflects on general considerations and levels of risk for patients, the adaptation of haemoglobinopathy care, the blood transfusions safety and the blood supply challenges.
The safety concerns linked to the use of DEHP plasticizers, a manufactured chemical common in blood bags and PVC intravenous fluid sets, has been explored, and even questioned, by many in recent years. TIF's Statement follows the publication of the guidelines prepared by the European Commission’s Scientific Committee on Health, Environment and Emerging Risks (SCHEER) in June 2019 and the consequent decision to gradually withdraw products made with this plasticizer from 2023, and replace it with alternative plasticizers.
Through this Position Statement, TIF encourages National Health Authorities of every country across every region of the world, in the context of their national fight against the COVID-19 pandemic, to promote and adopt a series of policies in relation to the protection of the health and lives of individuals with haemoglobin disorders.
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.