INTERNATIONAL THALASSAEMIA DAY

International Thalassemia Day promotes awareness, early diagnosis, and research to improve care and combat misinformation. On the occasion, Fondazione Gianni Benzi created short videos to explain the disease, daily life, and new therapeutic perspectives in a simple and accessible way.

UNDERSTANDING THE CONDITION

What exactly is thalassaemia? Can it be cured? And why is it so important to be treated in a specialist centre? In these short videos, we debunk common myths, explain the mechanisms of the disease, and show why proper management and comprehensive care can make a real difference in patients’ lives.

Thalassaemia: 3 things (almost) nobody knows

Francesca Basile, Communication Officer at Fondazione Gianni Benzi, outlines three key and little-known aspects of thalassemia, debunking common myths and explaining the genetic and clinical basis of the disease.

Thalassaemia: can it really be cured?

Prof. Adriana Ceci, former President of Fondazione Gianni Benzi, explores the difference between cure and treatment in thalassemia, describing current options and the prospects offered by innovative therapies.

Specialist centre: why does it make a difference?

Sabina Sblano, researcher at Fondazione Gianni Benzi, explains the importance of specialized centers and multidisciplinary care in improving thalassemia management.

EVERYDAY LIFE WITH THALASSAEMIA

Thalassaemia is not just a diagnosis: it is a reality that becomes part of everyday life. In this section, we explore quality of life, day-to-day balance, and important choices such as parenthood. Because today, with the right care and information, it is possible to build a full and meaningful life.

Thalassaemia and quality of life: is it possible to live well every day?

Andrea Tanzarella, a young student, lends his voice to illustrate the daily challenges faced by thalassemia patients and the perspectives on their quality of life.

Thalassaemia and parenthood: is it possible?

Serena Ottomano, Project Manager at Fondazione Gianni Benzi, discusses parenthood in thalassemia, outlining opportunities, risks, and the importance of planning and genetic counseling.

RESEARCH

What is really changing in thalassaemia? And how does a new therapy come about? These videos take you behind the scenes of research: from clinical studies to new therapeutic perspectives, right through to the challenges of accessing care. To understand where we are today… and where we are heading.

Thalassaemia: what’s in the pipeline? Clinical trial update 2026

Silvia Torretta, researcher at Fondazione Gianni Benzi, provides an update on clinical trials and new therapeutic perspectives for thalassemia in 2026.

How is a medicine for thalassaemia developed?

Sabina Sblano, researcher at Fondazione Gianni Benzi, describes the process of developing a drug for thalassemia, from preclinical research to regulatory approval.

New therapies for thalassaemia: are they really for everyone?

Silvia Torretta, researcher at Fondazione Gianni Benzi, discusses new therapies for thalassemia and the challenges related to equitable access to innovative treatments.

THERAPIES

Transfusions are still important, but they are no longer the only answer. In this section, we explore new therapeutic options: innovative medicines, gene therapy, and gene editing. A journey through the approaches that are transforming the way thalassaemia is treated.

New medicines: not just transfusions

Annalisa Landi, researcher at Fondazione Gianni Benzi, illustrates the role of new drugs in reducing transfusion dependence and improving patients’ quality of life.

Gene therapy: can a single treatment be enough?

Maria Luisa Dalessandro, researcher at Fondazione Gianni Benzi, explains how gene therapy works and its potential as an innovative approach for treating thalassemia.

Gene editing: can we really rewrite DNA?

Andrea Vitelli, trainee at Fondazione Gianni Benzi, explores gene editing technologies such as CRISPR, highlighting their potential to correct the genetic causes of the disease.

SYSTEM AND SOCIETY

Thalassaemia is not only about medicine, but also about people, healthcare systems and the wider world. In this section, we discuss the active role of patients in decision-making processes and the importance of international collaboration to ensure access to care and improve disease management at a global level.

From patient to expert: the patient’s role

Sabrina Tanzarella, a young student, explains the active role of patients in decision-making processes, particularly within the European Medicines Agency (EMA).

Thalassaemia beyond borders: what is changing around the world? The ARISE project in Africa

Lucia Ruggieri, researcher at Fondazione Gianni Benzi, presents the ARISE project, highlighting international collaborations and advancements in thalassemia management worldwide.