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 …
The Pediatric and Primary Lymphedema Working Group (PPL WG)’s Spring Meeting, traditionally held face to face, took place online on June 12th, 2021. Chaired by Dr. Robert Damstra, it was attended by 10 healthcare professionals from 6 countries as well as five patient advocates from the PPL ePAG. The afternoon …
This month we feature Françoise Steinbach, the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Heritable Thoracic Aortic Working Group (HTAD WG), from France. Françoise tells us how she became involved with VASCERN, what people should know about the reality of living with Marfan syndrome and how she hopes …
The first live webinar from our Vascular Anomalies Working Group (VASCA-WG) was held on April 28th, 2021 and focused on the “Classification of vascular anomalies”. This webinar started with a brief presentation of the VASCA-WG by surprise guest, Prof. Miikka VIKKULA (Chair of the VASCA-WG), who equally announced the publication …
