Now it’s decided; our Coordinating Committee has decided that we will hold our membership meeting now finally in September 2022. We are now keeping all our fingers crossed that the meeting can be held on site in Paris. It will be, just as previously planned, the French Marfan association that organizes our meeting. Our accommodations…
Here we invite to an online meeting for young adults with Marfan syndrome. We hope that you who are member organizations of Marfan Europe Network will spread it further in your various digital, or other types of channels. To all the young adults! Online Meeting on July 4th, 2021! You are between 18 and 28 years…
Meeting for member organizations 2021 postponed to 2022 As we previously have announced, our joint meeting, which would have been held this year, will be postponed to 2022. The new date is 15-18 September and the venue is Paris. Our friends in France are already in the process of planning the medical presentations. Meeting for…
Results Aortic Irbesartan Marfan Study Results from the recent Aortic Irbesartan Marfan Study (AIMS) are published on the Marfan Trust website. According to this study the drug Irbesartan reduces aortic dilatation in children and young adults with Marfan syndrome. A summary of the Research Project and findings can be found here.
Bakoumba animation In 2018, the French association asked European Marfan associations if they would be interested in translating the Marfan Children’s book “Bakoumba” to European languages. The book is about a Marfan lion that slowly realizes that he is very useful for many things, so he starts to feel better about himself. It is a…
COVID-19 in Marfan Syndrome and Related Conditions The Marfan Foundation held an informative webinar on COVID-19 (novel coronavirus), with three esteemed members of their Professional Advisory Board. They reviewed the Professional Advisory Board’s latest statement on COVID-19 and answered questions from registrants directly related to risk factors for people with Marfan and other genetic aortic conditions. A…
VASCERN COVID-19 Recommendations Dear MEN members, With the current global spread of the novel coronavirus SARS Cov-2, causing COVID-19, the experts from the Rare Disease Working Groups of VASCERN have prepared the following consensus statements for patients with rare vascular diseases. A Dutch and Maltese translation of the statements can be found here. More languages…
Dear MEN members, THE DARK SIDE OF THE DISEASE The revised Ghent nosology presents the classical features of Marfan syndrome. However, behind its familiar face, Marfan syndrome hides less well-known features. The German Marfan Organization listed unusual symptoms and clinical experts reviewed the literature on clinical features of Marfan syndrome not listed in the Ghent…
LIST OF MARFAN REFERENCE CENTERS Dear MEN members, At our latest biennial meeting in Drammen Norway, we commonly decided to make out a list of all the Marfan expertise centers available throughout Europe, or at least in the countries that each of you represent. Some of these centers are collaborating with the VASCERN as full…
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…
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