For the occasion of Rare Disease Day 2018, the European Reference Networks Coordinators Group (ERN-CG) released a position statement regarding the UK’s involvement in the ERN project post-Brexit. The Network coordinators call upon the European Commission and the UK government to ensure that a solution is found so that the…
This year, February 28th marked not only Rare Disease Day but also the official one year anniversary of the 24 European Reference Networks (ERNs), which were approved to receive the ERN label by the ERN Board of Member States on December, 2016 and were officially launched on March 1st, 2017!…
The first Pill of Knowledge (PoK) by the Heritable Thoracic Aortic Diseases (HTAD) Working Group (WG) is now available on our YouTube Channel! This PoK is on the topic of Marfan Syndrome and is produced by HTAD-WG Chair Prof Julie De Backer. This PoK gives an overview of the diagnosis…
VASCERN Spotlights: Professor Guillaume Jondeau This month we interview VASCERN Coordinator, Professor Guillaume Jondeau, a cardiologist from Paris, France. Prof Jondeau took the time to answer our questions about how he became the Coordinator of VASCERN, his expertise in Marfan syndrome and related diseases, and his hopes for our…
The 11th edition of Rare Disease Day 2018 takes place on February 28th, 2018 and to mark this International day of raising awareness for rare diseases, VASCERN will be attending the “Rare Disease Village”, organized by the French Rare Disease Networks (Filières de Santé Maladies Rares), at La Canopée des…
The latest edition of OrphaNews features an editorial dedicated to the European ReferenceNetworks (ERNs), highlighting their first year of achievements and the challenges they still face ahead. Many topics are covered including the successful launch and implementation of the Clinical Patient Management System (the virtual consultation tool), data integration and interoperability in ERN registries, the Governance structures of the…
We are pleased to announce that the full report from VASCERN’s First Annual Seminar (#VASCERNdays2017) is now available! This comprehensive report details the two day seminar that took place in Paris, France on October 13-14, 2017 and that was attended by over 80 participants from all across Europe (Read our…
VASCERN Spotlights: Natascha Assies Welcome to a new monthly article segment entitled VASCERN Spotlights! Each month we will introduce one of the passionate and hard-working members of our network through a series of questions and answers. Our first VASCERN spotlight features the lovely Natascha Assies, from the Netherlands, who is…
We are very pleased to announce that the first two Pills of Knowledge (PoK) produced by VASCERN are now available on our YouTube channel! These first two PoK have been created by the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG). The first video entitled, “An Overview of Hereditary Haemorrhagic Telangiectasia” features…
A new publication, co-authored by Prof Alessandro Pini (VASCERN eHealth and Training & Education Chair and HTAD-WG and MSA-WG member), entitled “Impaired Central Pulsatile Hemodynamics in Children and Adolescents With Marfan Syndrome” is now available. This study focuses on a cohort of children and adolescents with Marfan syndrome (MFS), a rare vascular…
