Advancing Patient-Centred Innovation in Thalassaemia Care at EHA2026 – TIF
Thalassaemia International Federation shared a post on LinkedIn:
“On 12–13 June, TIF was pleased to participate in several key sessions at the European Hematology Association (EHA) Congress EHA2026, following important developments across thalassaemia, haemoglobinopathies, genetherapy, patient-centred outcomes, access, and clinicaltrials.
A central theme across the sessions was the need for personalised, evidence-based, and PatientCentredCare. In thalassaemia, this means considering each patient’s full clinical history, organ complications, treatment journey, and long-term outcomes, particularly as new therapeutic options continue to evolve.
The programme also highlighted important developments in non-transfusion-dependent thalassaemia (NTDT).
Prof. Ali Taher presented the evolving landscape of NTDT, referring to key milestones in disease understanding and the role of the respective TIF Guidelines in supporting better care.
Prof. Maria Domenica Cappellini focused on emerging morbidities in the ageing thalassaemia population, including cancer, atrial fibrillation, atherosclerosis, and clonal haematopoiesis, underscoring the need for continued vigilance and comprehensive long-term management.
During the EHA-EMA-FDA Session on Global Trials, Mr. Loris Brunetta presented the patient perspective, stressing that the patient voice must be embedded across the full clinical development trajectory.
His contribution reinforced the importance of designing clinical trials that are inclusive, representative, and responsive to regional norms, cultural priorities, and patients’ real-life expectations.”
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