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 important document, prepared by TIF in close collaboration with the Government of Cyprus, serves as a comprehensive and evidence-based guide to strengthening national responses to thalassaemia and other related hereditary haemoglobin disorders.
This Position Paper discusses the significant barriers that affect patient access to Advanced Therapy Medicinal Products (ATMPs) and calls for policymakers, healthcare professionals, and society at large to acknowledge and address these disparities.
This position paper examines the growing pressures that emerging public health challenges place on national health systems, focusing on the rising prevalence of thalassaemia and its potential implications for the sustainability and resilience of health systems across the EU.
To support the social health protection of people with thalassaemia and other haemoglobin disorders, TIF developed a Disability Risk Assessment Chart to guide individualised assessments. Its parameters are selected based on their benefit to patients, in line with TIF’s TDT Guidelines.
The Thalassaemia International Federation (TIF) welcomes the European Commission’s proposed Regulation on Blood, Tissues and Cells as a significant step towards strengthening safety for blood donors and recipients across the EU and improving patient access to innovative transfusion and transplant therapies.
The Thalassaemia International Federation (TIF) expresses its deep disappointment at bluebird bio’s decision to wind down its European operations and make Zynteglo™, its gene therapy for beta-thalassaemia, available exclusively in the United States.
In this position statement, TIF addresses common questions and concerns among blood donors about COVID-19 vaccination and blood donation.
Gene therapy represents a long-awaited breakthrough for people with thalassaemia. National health authorities must recognise the value of innovative treatments, considering both the disease’s impact on patients and families and its full cost to healthcare systems.
Developed under TIF’s “Thalassaemia in Action” (THALIA) programme (2018–2021), this document examines the challenges facing people with thalassaemia and sickle cell disease in the EU. It sets out recommendations for policymakers to address unmet needs and policy gaps, and improve patients’ health and quality of life.
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.
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