Position Papers
TIF actively engages in the process of developing position papers on key issues of concern for patients with thalassaemia and other haemoglobinopathies, seeking to improve their quality of life and access to treatment.
Each TIF position paper is developed through extensive research and consultation with our members worldwide. Once finalised, it is shared with health authorities and key stakeholders at national, regional and international levels to inform policy and promote action on the issues addressed.
The papers are also distributed to TIF’s Global Network of Health Professionals and thalassaemia associations worldwide. These resources support patient advocates in engaging in constructive dialogue with national health authorities, the medical community, research institutions and industry, and in advocating for the implementation of TIF’s recommendations.
We invite you to read our Position Papers found below:
This position statement examines the heightened risks COVID-19 may pose to people with thalassaemia and sickle cell disease, alongside adaptations to care, transfusion safety and blood supply challenges.
TIF’s statement examines safety concerns surrounding DEHP, a plasticiser used in blood bags and PVC intravenous sets. It follows the European Commission’s SCHEER guidelines (June 2019) and the subsequent decision to phase out DEHP-containing products from 2023 in favour of alternative plasticisers.
In this position statement, TIF calls on national health authorities worldwide to adopt policies that safeguard the health and lives of people with haemoglobin disorders during the COVID-19 pandemic.
This document brings together TIF’s positions on key issues affecting people with thalassaemia and other haemoglobin disorders, providing a practical reference for patient advocates, healthcare professionals and policymakers to support informed dialogue and advocacy.
TIF’s 'Safeguarding Blood Safety' position paper complements its educational work on this vital aspect of thalassaemia care. It forms part of a series addressing issues central to effective disease management and patients’ health and quality of life worldwide.
In 2014, the Thalassaemia International Federation (TIF) took action to highlight the need for access to antiviral treatment for people with thalassaemia living with hepatitis C.
Providing patients and their families with reliable, up-to-date information is a core responsibility of patient organisations, particularly those supporting people with lifelong genetic conditions such as thalassaemia.
The Thalassaemia International Federation (TIF) continues to advocate for stronger, more coordinated action to protect patients from counterfeit medicines.
This position paper highlights the need for early, proactive care for people with non-transfusion-dependent thalassaemias (NTDT). It emphasises appropriate transfusion support and the monitoring and treatment of iron overload to prevent serious complications and improve patients’ health and quality of life.
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