Category Archives: News
VASCERN now has its third official Affiliated Partner: Medical University Graz, from Graz, Austria This center will be represented by Dr. Paolo Gasparella and and Dr. Emir Haxhija, pediatric surgeons from the Department of Paediatric and Adolescent Surgery in their centre, who will be bringing their expertise to the Vascular …
We are happy to announce that the General Patient Pathway for Pediatric and Primary Lymphedema (PPL), by our PPL Working Group (WG), is now online! Look at the General Patient Pathway for Pediatric and Primary Lymphedema here You can equally find the pathway on the VASCERN website here or at …
We would like to welcome Aaike van Oord to VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Vascular Anomalies! Aaike is from the Netherlands, and is Chair of both LGD Alliance Europe and the LGD Alliance Nederland. He will be replacing former ePAG advocate Ange van …
During VASCERN Days 2019, we were lucky enough to catch up with Dr. Michael Frank, Co-Chair of the Medium-Sized Arteries Working Group (MSA WG), from Paris, France for a VASCERN Spotlights interview. Dr. Frank tells us how he became involved with VASCERN, the clinical research on vascular Ehlers-Danlos syndrome (vEDS) …
We are happy to announce that the position statement by the Heritable Thoracic Aortic Diseases (HTAD) Working Group entitled European reference network for rare vascular diseases (VASCERN) consensus statement for the screening and management of patients with pathogenic ACTA2 variants has just been published in the Orphanet Journal of Rare …
VASCERN is happy to welcome our second official Affiliated Partner: Univerzitetni klinični Center Ljubljana, from Ljubljana, Slovenia. This Slovenian Associated National Centre, will be represented by Dr. Tanja PLANINŠEK RUČIGAJ, a dermatologist who will bring her specialized expertise to the Pediatric and Primary Lymphedema Working Group (PPL WG). We were very happy that …
The Medium-Sized Arteries Working Group (MSA WG) held a brief face-to-face meeting in London on the morning of July 1st, 2019. Chaired by Dr. Leema Robert, the meeting was attended by healthcare representatives from Belgium, France, Italy and The Netherlands. Items discussed were the Marfan Foundation statement on celiprolol and …
As presented in a previous article, Bakoumba is a Marfan children’s book, originally published by the French Marfan Association – Association MARFANS, which is now being translated into various European languages. VASCERN has been collaborating with Association MARFANS and the Marfan Europe Network in order to manage the translations of Bakoumba and …
The Belgian Association of Marfan Syndrome (ABSM) celebrated their 20 year anniversary on Saturday October 5th, 2019 at the Palais des Académies in Brussels, Belgium. VASCERN was very pleased to endorse this event and had several of our members in attendance (both ePAG patient advocates and healthcare provider (HCP) representatives). …