The first step of the ERN application revision process (eligibility check by the European Commission) for new Healthcare Provider (HCP) members closed at the end of January. VASCERN is happy to announce that we have now received 27 new applications from 14 countries: 1 Belgium, 4 Germany, 2 Denmark, 2 …
The Do’s and Don’ts Factsheets on Marfan Syndrome and Related Disorders (by the Heritable Thoracic Aortic Diseases Working Group; HTAD WG) have now been translated into Swedish! Take a look here The Marfan syndrome factsheets are therefore now available in Swedish, English, Hungarian, Italian, Dutch and Spanish! As a deliverable …
This year, Rare Disease Day fell on the rarest day of the year, Saturday February 29th, 2020 (a leap year)! In France we were lucky enough to attend an event organised by the 23 French Networks for Rare Diseases (Les filières de santé maladies rares) that took place at Gare …
With the bilateral agreement signed we are happy to welcome our newest affiliated partner: The Cyprus Institute of Neurology and Genetics, from Nicosia, Cyprus! This Associated National Center will participate in both the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) and the Medium-Sized Arteries Working Group (MSA WG) and …
We are very pleased to announce that Juan Lameiro has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Pediatric and Primary Lymphedema (PPL). Juan is from Spain and represents Asociación Galega de Linfedema, Lipedema, Insuficiencia Venosa Crónica y otras Patologías Vasculares Periféricas (AGL), which is a Galician …
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 …
Great news for the rare disease community: a funding program introduced by the Chan Zuckerberg Initiative (CZI) has selected 30 rare disease patient-led organizations to make up the new Rare As One Network. This network will aim to accelerate research and drive progress in the fight against rare diseases! Each patient organisation …
We are very pleased to welcome Centre Hospitalier de Luxembourg from Luxembourg as a new VASCERN Affiliated Partner! This National Coordination Hub will be represented by Professor Klaus Kallenbach, cardiac surgeon, who will share his expertise with the Heritable Thoracic Aortic Diseases Working Group (HTAD WG). Prof Kallenbach will begin by joining the …
It’s time to meet another of the Pediatric and Primary Lymphedema patient advocates that have recently joined the VASCERN European Patient Advocacy Group: Eline Hoogstra. Eline is from the Netherlands and joined the Dutch Lymphedema & Lipoedema Network, NLNet, in 2014. She has worked closely on several campaigns with Huidfonds to …
