CC looks for next Treasurer As the 4 years term of our present treasurer expires by the upcoming MEN meeting in Norway in the end of September 2019, the Coordinating Committee is looking for a successor to be elected at that meeting. Main duties are the collection of the annual membership fee, accounting/reporting and planning…
Fluoroquinolones are NOT recommended in Marfan Syndrome As you might have heard, there has been a lot of talk during the last months about the use of fluoroquinolone antibiotics in Marfan Syndrome. A couple days ago, the FDA (Food and Drug Administration) has issued a warning concerning the use of this particular antibiotic in Marfan patients…
written by Elena De Moya Rubio Marfan Awareness day in Spain Did you know that tomorrow (December 3rd) is Marfan Sydrome Awareness Day in Spain? The Spaniards have been using this day for a long time to draw public attention to the Marfan syndrome. This year, they want to do it by posting photos…
written by Susanne London-Tinner Vascupedia Did you remember that today (19th of September) is Aortic Dissection Awareness Day? We talked about it here. This day is thus a very good day to tell you more about VASCUPEDIA! Vascupedia is an online platform offering free education in the field of vascular medicine, including research and the…
Marfan Europe Network has a new member The Coordinating Commitee of Marfan Europe Network is happy to announce that the Marfan Association from Spain (SIMA) is now an official member of MEN! We are very happy to include Spain to our network which now has 13 members from 12 different countries. The Spanish Marfan…
Text by Susanne London-Tinner September 19th is Aortic Dissection Awareness Day Last year a Swedish group of patients suffering from aortic dissection and closely related diseases and disorders has announced September 19th to be the international “Aortic Disease Awareness Day” in order to raise awareness for a widely unknown, but life-threatening disorder. Many hospital…
Text by Susanne London-Tinner Backpack health or A Marfan and Related Disorders International Patient Registry During the Amsterdam symposium in May 2018, the Marfan Foundation announced its partnership with Backpack Health in the effort to create an international patient registry for Marfan Syndrome and related disorders. Their joint aim is to enrol 6.000 patients within…
Text by Lise Murphy co-chair of the patient group Update from the “Marfan group” HTAD at VASCERN (As you probably know: HTAD means Heritable Thoracic Aortic Diseases at VASCERN – European Reference Networks for Vascular Diseases more info HTAD/VASCERN) New organisations can join here. Our network of active patient advocates in HTAD (ePAG…
text by Lauriane Janssen Bakoumba: a Marfan Children Book A while ago, I was contacted by the French Association, asking if European Marfan associations would be interested in translating the Marfan Children’s book “Bakoumba” to European languages. The book is about a Marfan child that slowly realizes that he is very useful for…
Text by Lauriane Janssen First European Patient Day in Amsterdam The first European patient day was held in Amsterdam after the International Research Symposium we talked about in the previous MEN news flash. This patient day attracted mainly patients from The Netherlands and from Belgium/Flanders, but also some from further away such as UK,…
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