Dear MEN members, During the MEN2019 meeting in Drammen, a new fundraising method by crowdfunding was presented to you (called Beat-it by Impatient) in combination with the 101 genomes project by the F101G. Many of you asked for additional information on these two initiatives, so Alisa Herrero, Thomas Carton and Romain Alderweireldt have compiled a…
Dear MEN members, A month ago we had our meeting in Drammen. We discussed about making a leaflet repository accessible for all our MEN members, in order to simplify the (re)edition of leaflets in different languages and to know what is available in the different countries. Therefore we ask all of you to share the…
Dear MEN members, If you were not able to join us during the Drammen meeting a couple weeks ago, or if you would like to watch the video of the presentation of Pr. Jacobs from the Maastricht University Medical Center: “International Marfan patients with complex aortic pathologies: the patient flies to the surgeon or vice…
The MEN meeting 2019 in Drammen was held last week and saw a record participation rate of 41 participants from 11 countries: 26 meeting delegates, 11 young adults and 6 external guests. All the delegates went back home with new ideas and perspectives, ready to continue working together remotely until the next face to face…
“Who will organise our meeting in 2021? Text by Karin Olsson Soon it is time for our joint meeting in Drammen in Norway. When it ends, we will raise the question of in which country our meeting will be held in 2021 (we meet every other year). Think about if maybe your country’s association wants…
UPDATE FROM HTAD/VASCERN – June 2019 More research on pregnant women with congenital heart disease and mechanical valves – like Marfan Syndrome and other hereditary aortic diseases Registry Of Pregnancy And Cardiac disease– ROPAC We are welcoming more collection of data about pregnancies in Marfan women. By sharing the experiences of a huge number of…
Marfan Europe Network has two new members The Coordinating Commitee of Marfan Europe Network is happy to announce that the marfan patients associations Marfan Trust (UK) and Den-i (Luxembourg) are now official members of MEN! We are very happy to include UK and Luxembourg to our network which now has 15 members from 14 different…
Update from the ePAG-HTAD-WG at VASCERN (March 2019) Text by Lise Murphy Marfan people – Start moving for your health! Three times a week. Advice on safe training here in a video with Prof. Guillaume Jondeau. Why? This VASCERN initiative brought about by patients and physicians who see that moderate physical activity, practiced regularly, improves…
Prof. Jacobs from the Maastricht Heart+Vascular Center to speak at the 2019 MEN meeting in Drammen We are happy to announce that Prof. Michael Jacobs from Maastricht has promised to be one of our medical lecturers at the Drammen meeting in September 2019. In preparation of the meeting he has kindly sent us an article…
By continuing to use the site, you agree to the use of cookies. more information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.