The Medium-Sized Arteries Working Group (MSA WG) held its Spring Meeting on Thursday, May 5th, 2022, which has been online for the past two years. Dr. Michael Frank (MSA-WG Chair) chaired the meeting, which was attended by 7 healthcare professionals, as well as the European Patient Advocacy Group (ePAG) Co-Chair …
VASCERN and the 24 ERNs stand in solidarity with Ukraine and its Rare Disease community. The ERNs have launched a new website (accessible in most EU languages, in Ukrainian and Russian) with contact points for each ERN by speciality as well as their list of members in Ukraine’s Border countries …
The Pediatric and Primary Lymphedema Working Group (PPL-WG) have been busy recently with the creation of two new resources, which are now available on the VASCERN website. The first is a new Dos and Don’ts Factsheet for patients on the topic of Children’s compression, which was initiated by the patient …
Rare Disease Day took place this year on February 28th, 2022 and VASCERN was happy to participate in this annual event that celebrates the rare disease community and aims to raise awareness, while highlighting the importance of attaining equity in social opportunity, healthcare, and access to diagnosis and therapies for …
The VASCERN webinar Diagnostic and Management Pathway for Capillary Malformations took place on Tuesday February 1st, 2022 and the recording is now available! This informative webinar was presented by Dr. Eulalia BASELGA TORRES, Pediatric Dermatologist from Hospital Sant Joan De Déu, Barcelona, Spain, and included an overview of the various …
A new Pill of Knowledge (PoK) video has just been released on the VASCERN Youtube channel entitled Lymphedema from a teenager’s perspective. This video, created by Lymphido Onlus (Italian Patient Association for Primary Lymphedema, member of the PPL WG ePAG) and validated by the the Pediatric and Primary Lymphedema Working …
In our first VASCERN Spotlights interview of 2022 we are thrilled to interview Dr. Gisela Teixido from the Hospital Universitari Vall d’Hebron in Barcelona, Spain, one of the new full Healthcare Provider (HCP) members as of January 1st, 2022. Dr. Teixido is member of the Heritable Thoracic Aortic Diseases Working …
The recording of the VASCERN webinar Diagnostic and Management Pathway for Venous Malformations, which took place on on Thursday January 20th, 2022 is now available. This informative webinar was presented by Professor Laurence BOON, plastic and reconstructive surgeon from Cliniques universitaires Saint-Luc, in Brussels, Belgium. It included a presentation of the pathway with each …
We are very pleased to officially welcome 13 new Healthcare Provider (HCP) full members who have joined VASCERN as of January 1st, 2022! These new HCPs first answered the 2019 call for membership to the existing European Reference Networks (ERNs) in November 2019 and the evaluation process, which has been …
A new article entitled The European Rare Disease Network for HHT Frameworks for management of hereditary haemorrhagic telangiectasia in general and speciality care has just been published in the VASCERN Special Issue of the European Journal of Medical Genetics. It is co-authored by members of the Hereditary Haemorrhagic Telangiectasia (HHT) working group. …
