Rome, 17 September 2026 – At the centre of the day was the official launch of the Mediterranean Network for Haemoglobinopathies, a new independent regional platform created to connect expertise, strengthen patient participation and support more equitable care across the Mediterranean.
The Mediterranean Network for Haemoglobinopathies (MNfH) has been officially presented, an international and multidisciplinary network that brings together patient associations, health professionals, researchers and health policy experts active in the field of haemoglobinopathies, with particular reference to thalassaemia and sickle cell anaemia. The Network, begins with representatives from Italy, Greece and Cyprus, stems from the awareness that these diseases still represent a significant health challenge for many Mediterranean countries, a region with a substantial burden of thalassaemia and other haemoglobinopathies and which, over time, has developed internationally recognised skills in the prevention, diagnosis, treatment and management of these diseases.
It is estimated that more than 38,000 people in Europe are affected by haemoglobinopathies[1] and, despite the significant progress made in recent decades, differences persist in access to specialist skills, treatment and therapeutic innovations, while the sustainability of transfusion resources and the introduction of new treatments pose increasingly significant challenges for health systems. Through a structured collaboration between countries, which share consolidated experience in the field of thalassaemia and other haemoglobinopathies, the Network aims to encourage the exchange of knowledge and dialogue among different professional and stakeholder groups, helping to address the main challenges related to the management of haemoglobinopathies in a coordinated manner.
The Network’s priorities include supporting the adequacy, safety and sustainability of blood supply, reducing inequalities in access to specialist care, supporting evidence-based dialogue on access to advances in treatment and innovation, enhancing the data and evidence generated in clinical practice and strengthening the role of patients and their associations in decision-making processes in the health sector. Particular attention will also be paid to the opportunities and challenges posed by new therapies for thalassaemia and other haemoglobinopathies, as well as to the changes underway in the European regulatory and health context.
The Steering Committee of the Mediterranean Network for Haemoglobinopathies commented: “The Mediterranean Network for Haemoglobinopathies was created from a shared desire to strengthen collaboration between countries and among all those involved in the prevention, diagnosis, treatment and care of haemoglobinopathies. Sharing knowledge, experience and good practices represents a concrete opportunity to reduce avoidable differences in access to high-quality care across the Mediterranean. The meaningful involvement of people living with these conditions and their representative organisations will be fundamental to the Network’s development.”
The Network is based on the principles of collaboration, patient-centricity, equity, independence and transparency and promotes international cooperation aimed at supporting more equitable access to high-quality care, with the aim of allowing every person suffering from thalassemia, sickle cell anemia or other hemoglobinopathies to access optimal care and benefit from advances in research, therapeutic innovation and the evolution of scientific knowledge, regardless of where they live.
Later in the day, in a separate initiative, the fourth edition of Knights for Rare was held, an international initiative promoted by Avanzanite Bioscience B.V. to enhance the role of patient associations and the contribution that these organizations offer on a daily basis in terms of support, representation and guidance to people living with rare diseases and their families. The initiative brings together representatives of patient associations, the scientific community, the health world and the biotech sector, promoting dialogue and collaboration on the needs of the rare disease community.
For this fourth edition, Avanzanite has identified UNITED ETS – Italian Federation of Thalassemia, Rare Hemoglobinopathies and Sickle Cell Disease as Rare Knight of the Year, recognizing its contribution to the protection and representation of people suffering from thalassemia, sickle cell disease and rare hemoglobinopathies. UNITED ETS brings together 38 associations present throughout the country and operates through advocacy, information, awareness and research promotion activities, with the aim of protecting the rights of people with rare hemoglobinopathies and contributing to the improvement of care and quality of care.
“Knights for Rare was born from the desire to recognize and enhance the fundamental role that patient associations play every day within the rare disease community. They represent an essential point of reference for people and their families and that, through their commitment, concretely contribute to improving awareness, representation and ultimately, quality of care – says Adam Plich, Founder and CEO of Avanzanite Bioscience B.V. – UNITED ETS embraces this commitment and is fully deserving of being this year’s Rare Knight. We are delighted to host this event for the fourth time and raise funds that can make a meaningful difference to the work that the Federation does.”
During the evening, through the charity dinner and the subsequent charity auction, more than 42,600.00 euros were raised, which will be allocated entirely to the projects promoted by UNITED ETS in support of people living with thalassemia, sickle cell disease and rare hemoglobinopathies and their families.
The day of 16 September represented a significant moment to strengthen the attention and commitment to people with haemoglobinopathies and the wider rare disease community, combining the launch of a new international collaboration platform with a concrete initiative to support patient organisations. The Mediterranean Network for Haemoglobinopathies marks the start of a path that The Mediterranean Network for Haemoglobinopathies marks the beginning of a collaboration designed to build on the expertise developed across the Mediterranean in thalassaemia and other haemoglobinopathies, promoting dialogue between patients, clinicians, researchers and institutions to promote increasingly equitable access to treatment and innovation, for the benefit of people living with these diseases and their families.
Founding Steering Committee
- Cyprus
Prof. Soteroula Christou, Thalassemia Center Archbishop Makarios III Hospital, State Health Services Organization, Cyprus
Miltos Miltiadous, Thalassaemia Association of Cyprus
- Greece
Dr. Maria Dimopoulou, Laiko General Hospital Athens
Styliani Mina, Hellenic Thalassaemia Association (ESTHA)
- Italy
Prof. Dr. Antonio Giulio Piga, University of Turin
Dario Martino, UNITED ETS
- International Thalassaemia Federation (TIF)
Dr. Androulla Eleftheriou, Executive Director, TIF (International Thalassaemia Federation)
[1] Solórzano González JM, et al. HemaSphere. 2023; 7(S3):2769–2770.
