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:
This Position Paper discusses the increasing vulnerability of national health systems to new and emerging public health challenges, with a particular focus on the growing prevalence of thalassaemia and its potential impact on the sustainability and resilience of EU health systems.
In an effort to safeguard the social health protection of people with thalassaemia and other haemoglobin disorders, TIF has taken the initiative to create a “Disability Risk Assessment Chart”, encompassing the different parameters that need to be taken into account for each patient’s individualised assessment. The selection of parameters is based on their level of benefit for the patient, according to TIF’s TDT Guidelines.
The Thalassaemia International Federation (TIF) welcomes the European Commission's proposal on the new EU Regulation for Blood, Tissues and Cells as a highly significant policy step towards improving the protection and safety of blood donors and recipients within and across the EU territory and increasing patient access to innovative transfusion and transplant therapies.
The Thalassaemia International Federation (TIF) is expressing its grave disappointment over the recent announcement of Bluebird Bio, concerning the “wind-down” of its operations in Europe and the exclusive disposal of its gene therapy for beta thalassaemia (Zynteglo™) in the United States.
In this Position Statement, TIF wishes to address and clarify to the extent possible basic questions that oftentimes concern blood donors with regard to Covid-19 vaccination and blood donation.
Gene therapy has been a long-awaited scientific development for thalassaemia patients and has given
hope, optimism, and opened new horizons. It is imperative for ground-breaking scientific advances and innovative therapies to be sufficiently recognized by national health authorities in conjunction with not only an understanding of the impact of the disease on the daily lives of patients and their families but also in regards to the actual cost-of-illness for healthcare providers.
This document has been drafted in the context of the activities of the TIF multiannual programme (2018-2021), “Thalassaemia In Action” (THALIA). Its aim is to provide an overview of the multiple factors that impact the lives of people with Thalassemia and Sickle Cell Disease living in the European Union, and highlight specific recommendations addressed to policymakers in order to address key challenges, unmet needs and policy gaps and ultimately improve the patients’ health and lives.
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.