The Marfan Europe Network is a coalition of support organisations concerned with people affected by Marfan syndrome or related disorders. It was originally named
European Marfan Support Network (EMSN) and was founded in 1991.
Marfan organisations within Europe form a network to support and encourage each other by exchanging and sharing information and working for the benefit of people with Marfan syndrome (or related disorders) and their families.
The meetings include lectures, discussions and exchange of experience. A youth group gives young people the possibilities to exchange their personal experiences.
The motto of the Marfan Europe Network is: “TOGETHER WE CAN!”
In 2015 Marfan Europe Network became member of EURORDIS. With 667 direct member organisations, Eurordis is recognised and listened to as the European organisation specialised in the needs of patients with rare diseases.
The organisation is governed by the following mission statement and rules and regulations:
Mission statement (amended version from 2015)
Rules and regulations (original version from 2007)
Young Adults rules and guidelines (original version from 2007)