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 …
The results from the latest Rare Barometer Voices survey entitled Rare disease patients’ preferences on data sharing and protection, have now been published on the EURORDIS website via a summary infographic. See the survey results here This survey was completed by 2,013 respondents from 66 countries and provides some interesting …
The Vascular Anomalies Working Group (VASCA WG)‘s first patient pathway, Severe/Rare Infantile Hemangioma, has now been translated into Swedish. Access it here This means that the pathway is now available in 5 languages: English, German, Italian, Spanish and Swedish (find them all here)! The VASCA WG should also soon be releasing several …
Our first VASCERN Spotlights interview of 2020 is with no other than Pernille Henriksen, our European Patient Advocacy Group (ePAG) co-chair for the Primary and Pediatric Lymphedema Working Group (PPL WG), who joined VASCERN in 2019. Pernille tells us how she became involved with VASCERN, her most memorable moment to …
A new collaborative publication entitled Features of Marfan syndrome not listed in the Ghent nosology – the dark side of the disease has been published in Expert Review of Cardiovascular Therapy. It is co-authored by members of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) including Prof. Julie De …
