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…
We are very pleased to announce the release of a brand new publication: the VASCA Magazine! Access it here This magazine was created on the initiative of the European Patient Advocacy Group (ePAG) members of the Vascular Anomalies Working Group (VASCA WG) in VASCERN and was supported financially by VASCERN…
The European Joint Programme on Rare Diseases (EJP RD) has launched its first free MOOC entitled “Diagnosing Rare Diseases: from the Clinic to Research and back“! Register here This MOOC is the result of hard work from several EJP RD partners, in particular ERN ITHACA (represented by Prof Laurence Faivre), ERN GENTURIS (represented…
We are very pleased to announce the publication of an article entitled “eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)” in the Orphanet Journal of Rare Diseases (OJRD). This publication, co-authored by Dr. Alessandro Pini (former VASCERN…
This month, we interview Dr. Hans-Jurgen Mager, a pulmonologist from the Netherlands working at St. Antonius Hospital and member of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG). Dr. Mager tells us how his passion for HHT was born, the work he has achieved in advancing diagnostic and therapeutic research…
During this month’s Vascular Anomalies Working Group (VASCA WG)‘s CPMS discussion, a guest case from a Danish Healthcare professional was discussed. The Danish healthcare professional joined 7 VASCA WG members from 5 European countries in order to receive advice on their complex vascular anomaly case. The group also had time…
World Lymphedema Day, March 6th, 2021 was celebrated across Europe with a remarkable collaboration among patient associations in Europe. Twenty-seven patient associations collaborated to co-sign a manifest, translated into 11 languages, to express their views and wishes for patients living with lymphedema. A group of associations went further by creating…
The VASCERN webinar: Infections and Lymphedema took place on March 24th, 2021 at 5pm. We had great interest for this webinar, with over 100 people registered! This collaborative webinar, that joined patient advocates and clinicians from our Pediatric and Primary Lymphedema Working Group, discussed the diagnosis, clinical features, treatment and…
This month we have the pleasure to talk to Elena de Moya Rubio, European Patient Advocacy Group (ePAG) Co-Chair for the Heritable Thoracic Aortic Diseases (HTAD) Working Group (WG), from Spain now living in Germany. Elena represents the German Marfan Syndrome Patient Organisation, Marfan Hilfe (Deutschland) e.V., and explains the…
