We are very pleased to introduce a brand new publication: the VASCA Magazine! A co-operation of five patient organisation in Europe representing patients with rare vascular anomalies.
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 kindly supported financially by VASCERN through its EU co-funding. For this we would like to thank the VASCERN coordination team in Paris. Our thanks also go to the authors, mainly from the VASCA WG team (healthcare professionals and patient advocates), the VASCERN coordination team in Paris and, finally, a contribution from Germany about cavernomas, which we ePAG members help to represent in our associations and which have yet to find a proper home in VASCERN.
Now, for the magazine itself. Our goal 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 aboutthe 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, we wish to publish scientific articles, especially by members of the VASCA WG’s HCPs and, if applicable, by experts from other working groups in VASCERN, and to complement these articles with testimonials from affected patients and their relatives.
Further topics include our « Pills of Knowledge » (videos etc.); outputs from the VASCA WG (Patient Pathways, Do’s and Don’ts etc.) and the ePAG (e.g. Patient Journeys) as well as 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 our first issue. We, the patient advocates, would like to continue this work and hope that we will receive financial support from public agencies or from donations in order to do so.
The editors: Maria Barea (VASCAPA, Belgium), Petra Borgards (Federal Association of Congenital Vascular Malformations, Germany), Caroline van den Bosch (HEVAS, Netherlands), Lex van der Heijden, (CMTC-OVM, Netherlands), Aaike van Oord (LGD Alliance Europe, Netherlands).
At the moment, this magazine is only available in digital format.
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