This month it’s Charissa Frank, European Patient Advocate Group (ePAG) Deputy Co-Chair for the Medium-sized Arteries Working Group (MSA WG) from Belgium, who is in the VASCERN Spotlight! Charissa is a patient advocate for both VASCERN and ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal …
The Pediatric and Primary Lymphedema Working Group (PPL WG) face-to-face meeting was scheduled in Helsinki but due to COVID-19, it had to be cancelled and was held online from June 4th to 5th, 2020. This virtual meeting was chaired by Dr. Robert Damstra and attended by 14 healthcare professionals from …
The Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG) held a virtual meeting on the morning of June 12th, 2020. Originally scheduled as a face to face meeting in Lyon, France, the group had to change their plans, due to COVID-19, and held the meeting online. Chaired by Dr. Sophie Dupuis-Girod …
A new article entitled Update and audit of the St George’s classification algorithm of primary lymphatic anomalies: a clinical and molecular approach to diagnosis has just been published in the Journal of Medical Genetics. Five of the authors are members of the Pediatric and Primary Lymphedema Working Group (PPL WG), including …
This month we had the chance to interview Dr. Sarah Thomis, a vascular surgeon from Belgium and member of the Pediatric and Primary Lymphedema Working Group (PPL WG). Dr. Thomis tells us how she became involved with VASCERN, what she believes are the greatest accomplishments of VASCERN to date and …
The European Patient Advocacy Group (ePAG) for Pediatric and Primary Lymphedema (PPL) has another new patient advocate on board: Carina Mainka from Germany! Carina represents the patient association KIF11 Kids that supports children with KIF11 mutations and their parents. Here’s what she has to say: “Our little son Paul, born …
Last week, VASCERN held it’s first live webinar on Thursday May 14, 2020 on the topic of Heritable Thoracic Aortic Diseases (HTAD) and Covid-19. The recording of the webinar is now available to watch again (or for the first time) here Access the slides from the webinar here This webinar featured …
We are happy to announce that with the last bilateral cooperation agreement signed, our final Affiliated Partner, Medical University Innsbruck, from Innsbruck, Austria, is now officially a member of VASCERN. This Austrian Healthcare Provider, which is an Associated National Centre, will be represented by Dr. Julia Dumfarth, a cardiac surgeon working at the Center …
The Vascular Anomalies Working Group (VASCA WG) face-to-face meeting, that was planned to take place in Brussels from April 28th to 29th, 2020 was instead transformed into a 2-day virtual meeting due to COVID-19. Chaired by Professor Miikka Vikkula, the meeting was attended by 14 healthcare professionals from 10 EU …
This month we have the pleasure to interview Manuela Lourenço Marques from Portugal. Manuela is the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL WG). She shares her story of becoming a patient advocate, starting a patient association, and what she values …
