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…
We are happy to announce that Diana Maas has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Heritable Thoracic Aortic Diseases (HTAD). Diana lives in the Netherlands and is a board member and representative of Contactgroep Marfan Nederland (The Dutch Marfan Association). She has Marfan syndrome and became…
We are very happy to announce that the proposal “Intranodal Magnetic Resonance Lymphangiography Studies Workshop“, submitted by Vascular Anomalies Working Group (VASCA WG) member Dr. Willemijn Klein (from Radboud University Medical Center Nijmegen), has been selected to receive funding in the first European Joint programme on rare diseases( EJP RD)…
How has the COVID-19 pandemic affected the lives of rare disease patients? The latest Eurordis’ Rare Barometer Voices survey aims to answer this very question by collecting rare disease patients’ experience of COVID-19. “The goal is to voice the specific needs of rare disease patients’ in relation to the COVID-19…
Due to the COVID-19 pandemic, the 10th European Conference on Rare Diseases & Orphan Products (ECRD) will now take place ONLINE on the 14th-15th of May, 2020. The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. The theme…
After almost 2.5 years of operation, we thought it was a good time to give an update on the progress of the Clinical Patient Management System (CPMS) and its implementation in the various VASCERN Rare Disease Working Groups (RDWGs). We currently have 72 users registered in the CPMS and all RDWGs have…
