The VASCERN webinar Pregnancy and PGD in Vascular Ehlers-Danlos Syndrome took place on on Wednesday September 28th. This informative webinar was presented by Dr. Michael Frank, Cardiologist and Specialist in Vascular Medicine from AP-HP, Hôpital Européen Georges Pompidou in Paris, France. It was followed by a Q&A session for participants to ask questions. If …
What a great way to end the month of October with its slew of conferences, seminars and scientific meetings discussing new research outcomes and improvements in patient treatment and care. The EuroThrombosis and EuroVessels 2022 (ETEV) meeting was held in Lisbon, Portugal from 20 – 22 October 2022. This conference was attended by Prof. Julie De …
The 14th International HHT Scientific Conference is the world’s largest gathering of HHT professionals and researchers, and it serves as an important forum for the exchange of new discoveries and ideas. The conference is held every two years and draws participants from all over the world. The conference was packed …
On the 6th and 7th of October, 2022, VASCERN held its annual seminar in Paris, France. It was a great pleasure to welcome our members and invited stakeholders from EJP-RD, EURORDIS, Fondation AP-HP, AP-HP Hôpital Bichat, Orphanet, members of our VASCERN Registries Project team, and FAVA-Multi (The French Network for Rare Vascular Diseases) …
In our VASCERN Exchange Program interview, we are thrilled to interview Dr. Edit Nagy from the Karolinska University Hospital in Stockholm, Sweden. Dr. Edit Nagy is a member of the Heritable Thoracic Aortic Disease Working Group (HTAD-WG). In this article, she shares what were her goals for the exchange program, …
The Marfan Foundation webinar on Family Planning and Pregnancy for Genetic Aortic Conditions hosted by the GenTAC Alliance Patient, Families, and Clinicians Education Working Group took place on Wednesday, September 28th 2022. This webinar featured medical experts from the US and our members Prof. Julie De Backer and Dr. Martijn Kauling from …
In this VASCERN Exchange Program interview, we are thrilled to interview Dr. Guido Giacalone and Dr. Florence Belva from the AZ Sint-Maarten, Mechelen, Belgium. Dr. Guido Giacalone and Dr. Florence Belva are members of the Pediatric and Primary Lymphedema Working Group (PPL-WG). In this article, they share what were their …
A new publication titled Angiotensin receptor blockers and β blockers in Marfan syndrome: an individual patient data meta-analysis of randomised trials has been published in The Lancet Journal and is co-authored by several members of our Heritable Thoracic Aortic Diseases Working Group (HTAD WG), Prof. Maarten Groenink, Prof. Julie De Backer, Prof. Arturo Evangelista, …
Mentors and educators, experts in the field, are available online to answer your questions and to support you during your journey in this #EJPRD MOOC until December 3rd, 2022. Take the opportunity to interact with them! ℹ️ https://www.ejprarediseases.org/upcoming-update-on-mooc-diagnosis-rare-diseases-from-the-clinic-to-research-and-back/
The Hereditary Hemorrhagic Telangiectasia Working Group (HHT-WG) has published an article titled European Reference Network for Rare Vascular Diseases (VASCERN): When and how to use intravenous bevacizumab in Hereditary Haemorrhagic Telangiectasia (HHT)? in the European Journal of Medical Genetics as part of the VASCERN Special Issue. It is co-authored by members, collaborating experts, and the ePAG …