Dear European Friends, 2 weeks ago, we unfortunately had to report that Lauriane Janssen, the Chair of the Marfan Europe Network, passed away very unexpectedly. She was 33 years old. For those who were attending the biennial M.E.N meeting in Norway in September, the news was a great shock. When we said goodbye on September…
A quick up-date from the “marfan-group” in the European Reference Networks, the HTAD (Heritable Thoracic Aortic Diseases) What is the HTAD? The network consists of clinicians specialised in Marfan and closely related diseases. The clinicians and their respective clinic have been approved on both a national and EU-level by official bodies. The European Reference Networks…
In 2019 we will be meeting in Drammen, Norway The Coordinating Committee is very pleased to announce that the Norwegian association (Marfanforeningen) will host our Marfan Europe meeting in 2019. The meeting will take place on 19-22 September 2019. The meeting will take place at at Hotel Scandic Ambassadeur Drammen in Drammen a little bit…
Marfan Patient day in Amsterdam – May 6th 2018 Please join us for the first The Marfan Foundation International Patient Symposium on Marfan Syndrome and Related Disorders to be held in Amsterdam featuring speakers from several countries including the US. This event offers both education and support programs that were created to increase your understanding…
New website promoting our work and our members In our network, we always try to communicate in the best way possible with our members. Now, we have a new tool for this. We just launched our new website at www.marfan.eu. The website makes an overview of our members, our network, our history, about Marfan Syndrome,…
Marfan symposium in Amsterdam 3-5 May 2018 The 10th International Research Symposium on Marfan and Related Disorders will be held in Amsterdam in the Netherlands May 3-5, 2018 www.marfan.org. As usual, the Marfan Foundation in USA, are the main organizer, now together with the Marfan Association in the Netherlands. The deadline for the reduced price…
Overview of the medical and research literature of Marfan Syndrome in 2016-2017 Lauriane Janssen has collected a lot of the newest medical and research literature. Summary This is a short overview of what has been going on in the research field during the past year. This list is not exhaustive and does not include case…
Meeting Report The meeting took place in the Netherlands. People from national organisation in Finland, Belgium, Denmark. France, Germany, and naturally the Netherlands attended. It was as always a pleasure to see the Marfan Europe family. During the meeting there were interesting lectures about genetics, cardiology, Losartan, and aorta surgery. Purpose Marfan Europe Network is…
Young Adults Meeting 2017 in Leiden, the Netherlands One thing became abundantly clear for the Young Adults-group when the biennial Marfan Europe Network meeting in Leiden was opened this year. Participation needed to be bigger, the youngsters concluded as they did a head count. The group existed of just three people, and this was not…
New Chairman and “New-Old” CC At the meeting in Leiden, our former chairman Martin J Skov, from the Landsforeningen for Marfan Syndrome in Denmark, did not re-apply for a new mandate as chairman after his mandate came to an end. Thank you Martin for the years we had the pleasure of having you as our…
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