Mediterranean Network for Haemoglobinopathies Launches in Rome, Connecting Clinical Experts and Patient Leaders to Advance Equitable Care

The Mediterranean Network for Haemoglobinopathies (MNfH) was recently launched at Palazzo Wedekind in Rome, bringing together leading clinicians and patient representatives from Cyprus, Greece, and Italy, with the Thalassaemia International Federation (TIF). Supported by Avanzanite Bioscience as Founding Sponsor, the independent regional platform will connect expertise across borders, strengthen the patient voice, and turn shared knowledge into practical initiatives that can improve care for people living with haemoglobinopathies.

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Avanzanite enabled the establishment of the Network in recognition of both the considerable expertise that already exists across the Mediterranean and the persistent gaps that remain in access to specialist care, sustainable blood supplies, treatment advances and evidence-based innovation.

For Avanzanite, being the Founding Sponsor reflects a broader belief that scientific progress can create meaningful patient impact only when knowledge, innovation and good practice can reach the people who need them. The company therefore values an independent platform that can help connect expertise, bring greater visibility to unmet needs and strengthen collaboration between clinicians, patients and other stakeholders.

At the centre of the launch, the founding members endorsed a Declaration of Intent setting out the Network’s shared vision, mission, principles and initial priorities. Through the Declaration, they commit to connecting expertise, listening to patients, sharing knowledge and good practices, identifying needs and acting collectively, supporting evidence-based improvement and advancing equity.

The Network’s vision is a future in which every person living with haemoglobinopathies has equitable access to optimal care and the opportunity to achieve the best possible quality of life.

The Network will initially focus on four complementary objectives:

• Understand real-world needs and gaps across access, care pathways, specialist expertise, blood supply, innovation, data, and policy implementation.
• Connect expertise and strengthen collaboration among healthcare professionals, patient organisations, researchers, and policy stakeholders through peer learning and cross-border exchange.
• Strengthen the patient voice by ensuring that people living with haemoglobinopathies identify priorities and shape solutions.
• Support evidence-based improvement and access by sharing clinical evidence, research, real-world data and experience.

“The Mediterranean has built exceptional expertise in haemoglobinopathy care over decades, but knowledge and good practice do not always travel easily across borders,” said Professor Antonio Giulio Piga, University of Torino and member of the MNfH Founding Steering Committee. “By connecting clinical expertise with patient experience, the Network can help turn what we already know into better outcomes for people living with haemoglobinopathies.”

Haemoglobinopathies, including thalassaemia and sickle cell disease, are among the most prevalent inherited disorders in the Mediterranean region. While countries across the region have developed considerable expertise in prevention, diagnosis and care, significant differences remain in access to specialist services, sustainable blood supplies, treatment advances and evidence-based innovation.

People living with haemoglobinopathies must continue and strengthen their active partnership in identifying priorities and shaping solutions at the decision-making level,” said Dr. Androulla Eleftheriou, Executive Director of the Thalassaemia International Federation (TIF) and member of the MNfH Founding Steering Committee. “TIF welcomes a Network that complements and places patient experience alongside clinical evidence and is built on equity, transparency and respect for national contexts. These principles are essential if regional collaboration is to respond meaningfully to real needs.”

MNfH is guided by a Founding Steering Committee comprising patient representatives and leading medical experts from Cyprus, Greece, and Italy, together with TIF. Members participate on an equal basis and independently set the Network’s priorities and direction.

Starting with Cyprus, Greece and Italy will allow the Network to establish effective ways of working, develop practical activities and learn from their impact. The experience and outcomes of this initial phase will help shape the Network’s future development and its potential for broader Mediterranean collaboration.

“Avanzanite is proud to help establish an independent platform where clinicians, patient representatives and other stakeholders can collaborate around shared challenges,” said Adam Plich, Co-Founder and CEO of Avanzanite Bioscience. “Our decision to become Founding Sponsor reflects a simple belief: the Mediterranean already has deep expertise in haemoglobinopathy care, but there are shortfalls in how knowledge, evidence and innovation translate into equitable access for patients. In supporting the Network, we hope to assist in that expertise being better connected, for unmet needs to be more visible and for collaboration resulting in meaningful action. As Founding Sponsor, our role is to enable the conditions for collaboration, while the Founding Steering Committee independently sets the Network’s priorities and direction,” Plich added.

Notes to editors

The Declaration of Intent

The Declaration of Intent establishes the Network’s shared vision, mission, priorities, principles and commitments. The founding members have identified six initial challenges and opportunities where regional collaboration can add value:

• Adequacy and sustainability of blood supply
• Equitable access to high-quality care
• Access to advances in treatment and innovation
• Evidence-based patient prioritisation
• Stronger use of registries, data and real-world evidence
• Coordinated responses to European policy and legislative change

The Network’s work will be guided by the principles of collaboration and mutual learning, patient-centredness, evidence-based action, equity, respect for national contexts, complementarity, independence and transparency.

The Network will complement rather than duplicate existing national, regional and international initiatives. Relevant conflicts of interest will be disclosed and appropriately managed.

Through the Declaration, the founding members commit to connecting expertise, listening to patients, sharing knowledge and good practices, identifying needs and acting collectively, supporting evidence-based improvement, advancing equity, upholding independence and transparency, and learning and evolving as the Network develops.

Founding Steering Committee

Cyprus: Professor Soteroula Christou, Thalassemia Center Archbishop Makarios III Hospital, State Health Services Organization, Cyprus;
Miltos Miltiadous, Cyprus Thalassaemia Association

Greece: Dr Maria Dimopoulou, Laiko General Hospital Athens; Styliani Mina, Hellenic Thalassaemia Association (ESTHA)

Italy: Professor Antonio Giulio Piga, University of Torino; Dario Martino, UNITED ETS

Thalassaemia International Federation: Dr Androulla Eleftheriou, Executive Director

About the Mediterranean Network for Haemoglobinopathies

The Mediterranean Network for Haemoglobinopathies (MNfH) is an independent, multi-stakeholder platform established to strengthen collaboration in haemoglobinopathy care across the Mediterranean region. Initially bringing together representatives from Cyprus, Greece and Italy, together with TIF, the Network connects patient communities, healthcare professionals, researchers and policy stakeholders to share knowledge and good practices, identify real-world needs, support evidence-based improvement and advance equitable access to optimal health and social care.

About Avanzanite Bioscience

Avanzanite is a next-generation pharmaceutical company purpose-built to identify overlooked opportunities and unlock the full potential of rare disease medicines across Europe. Founded in 2022 and headquartered in Amsterdam, the Netherlands, Avanzanite was created around a belief that scientific innovation creates patient impact only when medicines reach those who can benefit from them. Through tailored partnerships, biopharma innovators entrust Avanzanite with the European future of their medicines. Avanzanite combines pan-European expertise, bold commercial and access strategy, together with high-performance execution, to transform Europe's complexity into opportunity, ensuring no patient is left behind and creating lasting long-term value for partners.

For more information, visit www.avanzanite.com.

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