The VASCERN coordination team, located in Paris, France, is looking for a full-time administrative assistant! The ideal candidate must be bilingual in both French and English. Read the full job description (in French) here! If you or someone you know is interested in joining us and being involved in the exciting project…
The Clinical Patient Management System (CPMS) is slowly being implemented in the various VASCERN Rare Disease Working Groups (RDWGs). So far, we have 50 registered users in the CPMS, 38 of which are active, and we have opened 6 panels where patient cases are being discussed between our experts. Several…
We are currently adding subtitles to our Pills of Knowledge (PoK) Videos! We hope that by adding subtitles in the various languages of our ERN members, this will allow more people to be able to understand the valuable information in these short videos and therefore reach a wider public across Europe.…
We are pleased to announce that the first PoK video from our VASCERN Pediatric and Primary Lymphedema Working Group (PPL-WG) is now available on our Youtube channel! The PoK is entitled “An Overview of Pediatric and Primary Lymphedema” and was created by Natascha Assies (NLNet), ePAG Co-chair of the PPL-WG and validated…
This May was a very busy month at VASCERN with four out of the five Rare Disease Working Groups (RDWGs) holding face-to-face meetings in various European cities. These meetings gave RDWG members the rare opportunity to sit down together and discuss their progress and action plans as well as advance…
VASCERN Spotlights: Dr Leema Robert What really interested me about the VASCERN network was that it was not just about the diagnosis but also the management of these patients. To end Ehlers-Danlos Syndrome (EDS) awareness month on a high note, we have the pleasure to present this month’s member…
May was Ehlers-Danlos Awareness Month! Are you now familiar with this group of rare disorders? The VASCERN Medium-Sized Arteries Working Group covers a rare subtype of this group of diseases called vascular Ehlers-Danlos Syndrome (vEDS). The ERN ReCONNET covers the other EDS subtypes. In addition to bruising and skin lucency, vEDS…
The 9th European Conference on Rare Diseases and Orphan Products (ECRD) took place from May 10-12, 2018 in Vienna Austria. This conference brought together all stakeholders from the rare disease community in order to discuss topics on research, treatment development, healthcare, social care, public health policies and support at European,…
The first two Patient Pathways, one from the HTAD-WG and one from the HHT-WG, have now been published! Patient Pathways aim to improve the care and management of patients with a rare disease. They are a very important tool used in defining the best patient care. Disease (or group of…
VASCERN Spotlights: Juergen Grunert This month it’s Juergen Grunert, the European Patient Advocacy Group (ePAG) Co-Chair for our Medium-Sized Arteries Working Group (MSA-WG), who is in the VASCERN Spotlight! Read about his most memorable moment as an ePAG representative so far and his hopes for VASCERN and for the ERNs…
