The first ERN newsletter was published on July 3rd, 2019 and sent to the various members of the ERNs by the Directorate General Health and Food Safety. This newsletter, divided into three parts, provides an overview of the activities of the 24 ERNs. The three parts are: 1) Interviews with …
Bakoumba, a Marfan children’s book, is being translated from French (originally published by the French Marfan Association (MARFANS-Assomarfans) into various EU languages. MARFANS has generously covered the copyright costs for different EU languages for use of the book in print format in Europe and is working on the edition of the …
A new collaborative publication entitled Genetic counselling and testing in adults with congenital heart disease: A consensus document of the ESC Working Group of Grown-Up Congenital Heart Disease, the ESC Working Group on Aorta and Peripheral Vascular Disease and the European Society of Human Genetics has just been published in the European Journal of Preventive Cardiology. It is co-authored by members of the VASCERN Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) including Prof. Julie De Backer (Chair of HTAD-WG) and Prof. Guillaume Jondeau (Co-Chair of HTAD-WG), Prof. Bart …
After the nomination of the Pernille Henriksen last month as the European Patient Advocacy Group (ePAG) Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL WG), it looks like the ePAG patient group for PPL is growing with the addition of Manuela Lourenço Marques, who will be ePAG Deputy …
We are happy to inform you that new translations of VASCERN’s Do’s and Don’ts factsheets for the chapter Marfan Syndrome and Related Disorders (by the HTAD-WG) are now available! As a deliverable of one of VASCERN’s Work Packages (Do’s and Don’ts Factsheets: development of guidelines for optimal care of patients …
We are happy to inform you that new translations of VASCERN’s Do’s and Don’ts factsheets for the chapter Pediatric and Primary Lymphedema (PPL-WG) are now available! As a deliverable of one of VASCERN’s Work Packages (Do’s and Don’ts factsheets: development of guidelines for optimal care of patients facing common problems …
The 5th Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day took place on Friday June 7th, 2019 in Paris, France. Professor Guillaume Jondeau, VASCERN and FAVA-Multi coordinator, opened the event in the morning and welcomed the French healthcare professionals and patient advocates in attendance. As members of the French …
This month we have the pleasure to interview Dr. Sophie Dupuis-Girod from Lyon, France. Dr Dupuis-Girod is Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group and talks about how she became interested in this rare vascular disease, her involvement in VASCERN and what she believes are the greatest achievements …
The Vascular Anomalies Working Group (VASCA WG) held their face-to-face meeting over two days from May 27th– May 28th, 2019 in Brussels Belgium at the De Duve Institute. The meeting, Chaired by Professor Miikka Vikkula, was attended by 11 of VASCERN’s healthcare professionals from 7 European countries (Belgium, Finland, Germany, …
We are happy to announce that VASCERN’s new European Patient Advocacy Group (ePAG) Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL-WG) is Pernille Henriksen! “My name is Pernille Henriksen and I have primary lymphedema of the left leg. Primary lymphedema is a rare disease with an estimated prevalence …
