About us
The Network
Marfan Europe Network is a coalition of support organisations concerned with people affected by Marfan syndrome or related disorders. It was founded in 1991 and originally named “European Marfan Support Network” (EMSN). It was renamed in 2014 to “Marfan Europe Network” (MEN).
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.
Together we can
The motto of Marfan Europe Network, “TOGETHER WE CAN!”, describes the motivation behind the organisation, and all MEN activities are organised to keep the information flowing between the member associations.
Meetings
Nowadays, members’ meetings are organised every second year in one of the members associations’ country. The meetings include medical lectures as well as discussions and exchange of experience between the different associations. A separated youth group meeting gives young people affected by Marfan Syndrome the possibility to exchange their personal experiences and tips and
tricks for every day life.
Further information
Besides the biannual meetings, Marfan Europe Network keeps in touch with its
member associations by regular newsletters and emails sharing all information
that might be interesting for their members.
In 2015 Marfan Europe Network became member of EURORDIS, 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)