New Mediterranean network aims to improve hemoglobinopathy care

Healthcare professionals and patient representatives from Cyprus, Greece, and Italy are joining forces in a regional initiative aimed at improving care for people with hemoglobinopathies, inherited blood disorders that include sickle cell disease (SCD) and thalassemia.

The Mediterranean Network for Haemoglobinopathies (MNfH), recently launched in Rome, aims to address gaps in hemoglobinopathy care across the region by connecting expertise across borders, strengthening the patient voice, and turning shared knowledge into practical initiatives.

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Supported by Avanzanite Bioscience as its founding sponsor, the independent platform will initially be guided by a steering committee of clinicians and patient representatives from Cyprus, Greece, and Italy, together with the Thalassaemia International Federation (TIF).

“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,” Adam Plich, co-founder and CEO of Avanzanite, said in a company press release. “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.”

Avanzanite commercializes and distributes Pyrukynd (mitapivat), an approved treatment for adults with thalassemia in the European Union, and holds exclusive commercialization and distribution rights to the therapy in the UK and Switzerland under an exclusive agreement with its original developer, Agios Pharmaceuticals.

Hemoglobinopathies such as SCD and thalassemia affect hemoglobin, the protein in red blood cells that carries oxygen throughout the body. Both are among the most prevalent inherited disorders in the Mediterranean region.

SCD is caused by mutations in the HBB gene that result in an abnormal form of hemoglobin called hemoglobin S. This can cause red blood cells to become rigid and sickle-shaped, ultimately leading to the symptoms and complications of SCD. In thalassemia, genetic mutations impair the body’s ability to produce hemoglobin.

Although countries across the Mediterranean have developed considerable expertise in prevention, diagnosis, and treatment, differences remain in access to specialist care, sustainable blood supplies, treatment advances, and evidence-based innovation.

“By connecting clinical expertise with patient experience, the Network can help turn what we already know into better outcomes for people living with haemoglobinopathies,” said Antonio Giulio Piga, a professor at the University of Torino, in Italy, and a member of MNfH’s founding steering committee.

Network focuses on equitable access and practical collaboration

The network’s overarching vision is a future in which people with hemoglobinopathies have equitable access to optimal care and the opportunity to achieve the best possible quality of life.

At its launch in Rome, founding members endorsed a Declaration of Intent outlining the network’s guiding principles and priorities for working toward that vision. The Declaration commits MNfH members to collaborating, listening to patients, sharing knowledge and good practices, acting on identified needs, supporting evidence-based improvements, and advancing equity.

The network’s initial work will focus on:

• identifying real-world needs and gaps in care, specialist expertise, blood supplies, access to innovation, data, and policy implementation
• connecting expertise and strengthening collaboration among healthcare professionals, patient organizations, researchers, and policymakers, including across borders
• strengthening the patient voice by ensuring that people with hemoglobinopathies help identify priorities and shape solutions
• supporting evidence-based improvements by sharing clinical evidence, research, real-world data, and experience

“TIF welcomes a Network that complements and places patient experience alongside clinical evidence and is built on equity, transparency and respect for national contexts,” said Androulla Eleftheriou, PhD, the executive director of TIF and a member of MNfH’s founding steering committee. “These principles are essential if regional collaboration is to respond meaningfully to real needs.”

The MNfH will initially operate in Italy, Greece, and Cyprus, allowing members to establish ways of working, develop practical activities, and learn from their impact. Lessons from this phase are expected to guide the network’s future development and potential broader collaboration with other Mediterranean countries.

“Avanzanite is proud to help establish an independent platform where clinicians, patient representatives and other stakeholders can collaborate around shared challenges,” Plich said. “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.”