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,…
Like last year, the Spring Meeting of our Medium-Sized Arteries Working Group (MSA-WG) took place online on June 3rd, 2021! Chaired by Dr. Michael Frank (MSA-WG Chair), it was attended by 7 healthcare professionals and also by European Patient Advocacy Group (ePAG) Co-Chair and Deputy Co-Chair for MSA: Juergen Grunert…
The VASCERN webinar on the topic of “HHT and the lungs“ took place on May 31st, 2021 at 6pm. This collaborative webinar involved clinicians and patient advocates from our Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG). Claudia Crocione (ePAG Co-Chair for HHT) started with a brief presentation of VASCERN and the…
A new publication entitled A human importin-β-related disorder: Syndromic thoracic aortic aneurysm caused by bi-allelic loss-of-function variants in IPO8 has just been published in The American Journal of Human Genetics (AJHG) and is co-authored by two members of our Heritable Thoracic Aortic Diseases Working Group (HTAD WG), Professor Bart Loeys and Dr.…
The Heritable Thoracic Aortic Diseases Working Group (HTAD WG), Chaired by Professor Julie De Backer, held their online Spring meeting on May 27th, 2021. The dynamic group was comprised of 25 Healthcare professionals from 11 countries as well as three patient advocates (including the European Patient Advocacy Group (ePAG) Co-Chair,…
Originally planned to be a face-to-face meeting, the annual Spring Meeting of the Vascular Anomalies Working Group (VASCA-WG) took place online on May 19th and May 25th, 2021. Chaired by Prof. Miikka Vikkula (VASCA-WG Chair), this meeting was attended by 17 healthcare professionals from 10 EU countries. The patients were…
