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.
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.
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.
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)
History of MEN
- 1991, July 12th: Foundation of Marfan Europe Network (initially under the name “European Marfan Support Network” (EMSN)), in Ghent, Belgium during the meeting of “European Heritable Connective Tissue Disorders”. The founding countries are Belgium, France, Germany, Switzerland, The Netherlands and UK.
- 1992, October: EMSN meeting in Holland, Hartenark centre, Bilthoven
- 1992, November: 2nd International Symposium on Marfan Syndrome in San Francisco and setting up the “International Federation of Marfan Syndrome Organisations”, IFMSO.
- 1993, August: EMSN meeting in Switzerland, Basel
- 1994, August: 3rd International Symposium on Marfan Syndrome in Berlin and simultaneously the EMSN and IFMSO meeting.
- 1995, August: EMSN meeting in Norway, TRS centre, Oslo.
- 1996, August: 4th International Symposium on Marfan Syndrome in Switzerland, Davos with the participation of patients and round table discussions with doctors and patients. The EMSN and IFMSO meetings were held after the symposium.
- 1997, August: EMSN meeting in Denmark, Billund.
- 1998, August: 5th International Symposium on Marfan Syndrome in Finland, Helsinki. EMSN and IFMSO meetings were held after the symposium.
- 1999, August: EMSN meeting in Smolenice (Bratislava), Slovakia. Founding of the EMSN Youth Group.
- 2000, August: EMSN meeting in Paris, France.
- 2001, August: EMSN 10th anniversary meeting in Brussels, Belgium. Spain joined the EMSN.
- 2002, September: EMSN meeting in Bilthoven, The Netherlands
- 2003, September: EMSN meeting in Fulda, Germany. Starting of the project “International Emergency Card”.
- 2004, September: EMSN meeting in Alicante, Spain
- 2005, September: 7th International Symposium, Ghent. The EMSN and IFMSO meetings were held during and after the symposium.
- 2006, September: EMSN meeting in Castelnaudary, France
- 2007, September: EMSN meeting in Bern, Switzerland. EMSN was invited to the celebration of the 20th anniversary of the Marfan Foundation Switzerland.
- 2008, September: EMSN meeting in Leiden, The Netherlands.
- 2009, August: EMSN meeting in Bergen, Norway.
- 2010, September: EMSN meeting in Ebeltoft, Denmark. UK and Spain left the EMSN.
- 2011, August: EMSN meeting in Eutin, Germany. Celebration of the 20th anniversary of EMSN. Sweden joined the EMSN. Austria became a candidate.
- 2012, August: Young Adults Meeting in Leuven, Belgium.
- 2012, December: Austria became a member of EMSN.
- 2012, December: Voting for a new mission statement closed.
- 2013, September: EMSN meeting in Zurich, Switzerland (including Young Adults Meeting). Decision for renaming the organisation to Marfan Europe Network.
- 2014, August: Young Adults Meeting in Klagenfurt, Austria
- 2015, October: Meeting in Kalmar, Sweden (including Young Adults Meeting).
- 2017, September: Meeting in Leiden, Netherlands (including YA Meeting).
To find reports from the meetings please click here to go to Media page.