This month we have the pleasure to talk to Professor Elisabetta Buscarini, Deputy Co-Chair of the Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG), from Crema, Italy. Prof Buscarini shares with us what she feels is the greatest challenge of working in the rare disease field (and the solution to overcome …
Our first VASCERN Spotlights interview of 2020 is with no other than Pernille Henriksen, our European Patient Advocacy Group (ePAG) co-chair for the Primary and Pediatric Lymphedema Working Group (PPL WG), who joined VASCERN in 2019. Pernille tells us how she became involved with VASCERN, her most memorable moment to …
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) …
In this edition of VASCERN Spotlights we meet Professor Sahar Mansour from London, UK, Prof Mansour is Co-Chair of the Pediatric and Primary Lymphedema (PPL) Working Group and talks to us about her interest in genetics and primary lymphedema, the challenges faced when trying to interpret genetic results in lymphedema …
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 …
VASCERN Spotlights: Caroline van den Bosch In this month’s VASCERN Spotlights we meet Caroline van den Bosch from the Netherlands. Caroline is the European Patient Advocacy Group (ePAG) Co-Chair for the Vascular Anomalies Working Group (VASCA WG) and shares with us how she became involved in VASCERN, the history behind …
This month we have the pleasure to feature Claudia Crocione, our ePAG Co-Chair for the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group, in the VASCERN Spotlight. Claudia is the Managing Director of HHT Europe and she shares with us how she became involved with VASCERN and her experience so far, what …
This month we had the chance to interview Dr. Alessandro Pini, a cardiologist from Milan, Italy. Dr. Pini is Chair of VASCERN’s eHealth Working Group as well as the Heritable Thoracic Aortic Diseases (HTAD) and Medium-sized Arteries (MSA) Working Groups. Read about how Dr. Pini became involved in VASCERN, his …
VASCERN Spotlights: Lise Murphy “What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to the European Reference Networks. I have appreciated this attitude a lot. I was also really impressed by the other patient advocates …
VASCERN Spotlights: Dr. Robert Damstra What is great about the ERNs is that they have given increased recognition to the field of rare diseases. For a very long time it was mainly secondary lymphedema (that is not a rare disease) that had all of the attention and now, thanks to …
