Haemoglobinopathies, Innovation, Patient Experience, and Equitable Access at EHA 2026 – TIF
Thalassaemia International Federation (TIF) shared a post on LinkedIn:
“On 11 June 2026, TIF took part in the opening day of the European Hematology Association (EHA) 2026 Congress in Stockholm, Sweden, engaging in a series of scientific, educational, and patient-centred sessions that placed Haemoglobinopathies, Rare Αnaemias, Innovation, Patient Experience, and Εquitable Access to care at the heart of the discussion.
TIF’s engagement on the first day also included participation in discussions and sessions organised by Vertex Pharmaceuticals, Sanofi, and Avanzanite Bioscience, with Mr. Loris Brunetta, TIF Board Member and Vice Chair of the EHA Patient Advocacy Committee (PAC), attending selected sessions in person and further strengthening TIF’s contribution to the patient advocacy dialogue at the European level.
Discussions on haemoglobinopathies and curative therapies underlined the importance of effective collaboration between treatment and transplant centres, shared clinical information, multidisciplinary care teams, and continuous psychosocial support for patients whose lives may be profoundly transformed by curative treatment.
In relation to Sickle Cell Disease, speakers highlighted the role of inflammation and immune dysregulation, and how these pathways may inform future therapeutic strategies.
The EHA-Patient Joint Symposium addressed two highly relevant themes for patient organisations: the first year of the EU Health Technology Assessment (HTA) Regulation and the growing role of Patient Experience Data in the approval and evaluation of new medicines. Both sessions reaffirmed that patient involvement is essential if innovation is to respond to real needs, treatment burdens, and outcomes that matter in daily life.
TIF also contributed to the Symposium ‘Clinical Decisions That Matter: Thalassaemia and Pyruvate Kinase Deficiency Through a Practical Lens’, organised by Avanzanite Bioscience, through a video presentation highlighting the progress achieved in Thalassaemia Care, while drawing attention to persistent inequalities in access, the burden of lifelong treatment, and the importance of stronger collaboration between clinicians, patients, and patient organisations.
More updates from EHA 2026 will follow in the coming days, so Stay Tuned!”
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