A new article entitled Severe adverse events during sirolimus “off-label” therapy for vascular anomalies has just been published in the journal Pediatric Blood & Cancer. It is co-authored by Vascular Anomalies Working Group (VASCA WG) members Dr. Jochen Rössler, Dr. Andrea Diociaiuti, Dr. Maya El Hachem and Dr. Friedrich Kapp. Access the…
The 1st VASCERN Patient Organisations’ Meet & Greet took place on January 29th, 2021 from 6:30-8pm. This event, hosted by Eurordis, gathered patient advocates and representatives from patient organisations already members of the VASCERN European Patient Advocacy Group (ePAG) as well as other interested representatives from patient organisations and delegates of…
With vaccination programs against SARS-CoV-2 already underway across Europe, VASCERN’s Rare Disease Working Groups have produced individual statements for their patients when it comes to COVID-19 vaccinations. The following statements are now available: Hereditary Haemorrhagic Telangiectasia (HHT) Heritable Thoracic Aortic Diseases (HTAD) Medium-Sized Arteries (MSA) Working Group – vascular Ehlers-Danlos…
We are very happy to present our first VASCERN Spotlights article of 2021 featuring Dr. Erik Björck: a clinical geneticist from Stockholm, Sweden and member of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG). Dr. Björck tells us why he enjoys being a clinical geneticist, the challenges of being…
A new collaborative research paper entitled Pregnancy outcome in thoracic aortic disease data from the Registry Of Pregnancy And Cardiac disease has been published in Heart. 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, Prof. Guillaume Jondeau…
We are happy to announce that VASCERN’s newest transversal working group (WG), the Pregnancy and Family Planning WG, now has a dedicated page on our website. Access the Pregnancy and Family Planning WG page here The group, coordinated by Professor Julie De Backer (Chair), Professor Guillaume Jondeau (Co-Chair) and Petra…
The Heritable Thoracic Aortic Diseases Working Group (HTAD WG) has been hard at work in order to release six new Pills of Knowledge (PoK) videos, just in time for the holidays! The PoKs are currently available in English and include several that are more directed at patients, and several that…
In December 2020, EURORDIS and the European Patient Advocacy Group (ePAG) patient advocates published a paper, which reviews the progress achieved so far and presents their vision of a mature European Reference Network (ERN) system. “Our vision is for a mature ERN system that leaves no person living with a…
A new Pill of Knowledge video from the Vascular Anomalies Working Group (VASCA WG) is now available! Created by Hevas and validated by the VASCA WG, it covers the topic of PIK3CA gene mutations and how an error in this gene can be the cause of congenital vascular malformations, such…
This month we talk to Christina Grabowski, European Patient Advocacy Group (ePAG) Deputy Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group (HHT WG), from Germany. Christina represents the German HHT Patient Organisation – Morbus Osler Selbsthilfe e. V and gives us her thoughts on the role of a patient…
