The Thalassaemia International Federation (TIF) has released a new White Paper, ‘Thalassaemia in the Americas: Status, Challenges, and Ways Forward’, marking a significant step toward strengthening regional understanding and response to thalassaemia across the continent.
Developed in the context of the 1st TIF Pan-American Conference on Thalassaemia and Other Haemoglobin Disorders, held in Washington, D.C. in July 2025, this publication provides the first region-wide, evidence-based overview of thalassaemia in the Americas. It examines key dimensions of care, including epidemiology, health-system readiness, prevention strategies, blood safety, iron overload management, access to MRI monitoring, and the availability of multidisciplinary care.
Although thalassaemia remains a rare disease in the region, the White Paper underscores its high clinical complexity and lifelong burden, as well as the significant inequities in access, quality, and outcomes experienced by patients across diverse health systems. Fragmented policies, limited surveillance, and uneven health-system capacity continue to shape care delivery, directly affecting individuals, families, and national healthcare resources.
Against this backdrop, the White Paper calls for coordinated national and regional action, emphasizing the need to strengthen surveillance and data systems, reinforce prevention and early-detection strategies, and ensure equitable access to comprehensive, multidisciplinary care. Importantly, it puts forward evidence-based, regionally relevant recommendations to support policymakers, clinicians, patient organisations, and other stakeholders in developing sustainable solutions and reducing avoidable disparities.
TIF hopes this White Paper will serve not only as a practical reference tool but also as a catalyst for informed dialogue, collaboration, and policy action across the Americas and invites all interested parties to engage with the publication, share its findings, and contribute to the ongoing dialogue.
