A new publication entitled Efficacy of Sirolimus in Patients Requiring Tracheostomy for Life-Threatening Lymphatic Malformation of the Head and Neck: A Report From the European Reference Network has just been published in Frontiers in Pediatrics. It is co-authored by members of the Vascular Anomalies Working Group (VASCA WG) and presents…
The Heritable Thoracic Aortic Working Group (HTAD WG) have just released a new series of Do’s and Don’ts factsheets on Loeys-Dietz syndrome! Download them here This series of 21 new factsheets deals with the specific Do’s and Don’ts for patients with Loeys-Dietz syndrome facing common situations including pregnancy, stroke, colonoscopy, physical…
We are happy to report that the EJP RD – European Joint Programme on Rare Diseases ERN Workshop – Advances in diagnostic and therapeutic methods for lymph flow abnormalities took place this month from September 9-10th, 2021. It was hosted by Dr. Willemijn Klein (Radboud University Medical Center Nijmegen), member…
A new comprehensive review paper on Marfan Syndrome has just been published in Nature Reviews Disease Primers and is co-authored by our very own Professor Julie De Backer, Professor Guillaume Jondeau, Professor Catherine Boileau, Professor Arturo Evangelista and the Heritable Thoracic Aortic Working Group (HTAD WG) of VASCERN! Access the…
After a well deserved summer break, members of the Vascular Anomalies Working Group (VASCA WG) were back on the Clinical Patient Management System (CPMS) last week to discuss a new guest case from Portugal. The virtual consultation panel included healthcare professionals from Belgium, The Netherlands, Finland, Germany and Spain. The…
The VASCERN Registries Project officially launched on May 1st, 2020 and since then much work has been done by our Registry Working Group, the Registry Technical Teams Working Group and all of our members. As a reminder, our registry project can be viewed as either a unique registry, with the…
The VASCERN webinar on the topic of “On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what’s in a name?“ took place on June 30th, 2021. This informative webinar was presented by Professor Fransiska Malfait, Medium-Sized Arteries Working Group (MSA WG) Co-Chair, from Ghent University Hospital in Belgium. It started with…
The Pediatric and Primary Lymphedema Working Group (PPL-WG) have just released two documents this month: a new Do’s and Don’ts factsheet on skin care for PPL and an updated version 2 of the General Patient Pathway for Pediatric and Primary Lymphedema! The new Do’s and Don’ts factsheet on skin care for…
June was Hereditary Haemorrhagic Telangiectasia (HHT) Awareness month and June 23rd was World HHT Day! This international event was a day to raise awareness for this rare inherited disorder of the blood vessels that is covered by VASCERN’s HHT WG. The HHT patient advocates and patient organisations of the European…
The Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) held their Spring meeting on Friday June 18th, 2021. Chaired by Professor Sophie Dupuis Girod, it was attended by 16 Healthcare Professionals from 5 countries and ePAG Co-Chair and Deputy Co-Chair, Claudia Crocione and Christina Grabowski. Former HHT WG Chair, Professor Claire Shovlin,…
