We are very pleased to announce the release of a brand new publication: the VASCA Magazine!
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 through its EU co-funding. The authors are mainly from the VASCA WG team (healthcare professionals and patient advocates), the VASCERN coordination team in Paris and, finally, there is also a contribution from Germany about cavernomas, which the ePAG members help to represent in their associations.
The goal of this magazine is to inform patients, healthcare providers (HCPs) and healthcare professionals about the current developments in the diagnosis, treatment and research of vascular malformations and equally about the work and services provided by the five participating patient organisations (and their active patient advocates) and how the VASCA WG and VASCERN help to advance this cross-border work.
For this purpose, the magazine contains scientific articles, mainly written by members of the VASCA WG’s HCPs and, if applicable, by experts from other working groups in VASCERN, and is complemented by testimonials from affected patients and their relatives.
Further topics include the “Pills of Knowledge” (videos) and other outputs from the VASCA WG (Patient Pathways, Do’s and Don’ts etc.) or the VASCA ePAG (e.g. Patient Journeys) as well as articles on the transversal projects of VASCERN (e.g. the VASCERN registry project) or the ERNs (e.g. Pregnancy and Family Planning Working Group).
We hope that you will enjoy this first issue. The patient advocates of VASCA would like to continue this work and hope to receive financial support from public agencies or from donations in order to do so.
A huge congratulations to the editors of the VASCA Magazine: Maria Barea (ePAG Deputy Co-Chair for VASCA; VASCAPA, Belgium), Petra Borgards (Federal Association of Congenital Vascular Malformations, Germany), Caroline van den Bosch (ePAG Co-Chair for VASCA; HEVAS, Netherlands), Lex van der Heijden, (CMTC-OVM, Netherlands), and Aaike van Oord (LGD Alliance Europe, Netherlands).
At the moment, this magazine is only available in digital format. We look forward to your feedback!
This publication has been financially supported by the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) – Project ID: 769036, which is partly co-funded by the European Union within the framework of the Third Health Programme “ERN-2016 – Framework Partnership Agreement 2017-2021