Marfan Europe Network: Advancing Collaboration Across Europe

A new publication in FEBS Letters highlights the work of the Marfan Europe Network (M.E.N.), a cross-border initiative uniting patient organisations, clinicians, and researchers to improve the lives of people with Marfan syndrome and related heritable thoracic aortic diseases (HTADs). 

The paper, titled “Marfan Europe Network: Together We Can”, explores how collaboration between patients and professionals drives scientific progress, better care, and stronger advocacy.

Read the full article in FEBS Letters 

Building a European community for Marfan and HTAD

The Marfan Europe Network brings together national patient organisations dedicated to Marfan syndrome and related disorders. Through shared projects and regular exchanges, the network strengthens communication between countries and promotes consistent information, support, and access to expert care.

Its goal is simple but essential: to make sure that no patient feels isolated and that families across Europe benefit from the same level of understanding and guidance, regardless of where they live.

The paper outlines how the network operates as a bridge between patient communities and medical experts, including collaboration with clinical specialists within VASCERN’s HTAD Working Group, who contribute to shared educational and research efforts.

Patient voices driving change

Authored by Tuija Ekegren, Françoise Steinbach, and Margit Aschenbrenner, all long-time advocates within the Marfan community, the publication captures how patient-led initiatives can help shape research priorities and improve everyday care.

Their experiences underline the importance of listening to patients not only as recipients of care but as equal partners in defining what good care looks like. This patient-centred model is now increasingly recognised as a key factor in successful European collaboration.

Learn more about the Marfan Europe Network.