VASCERN Spotlights: Hans-Jurgen Mager

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…

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Guest case from Denmark discussed in CPMS

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…

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Events that took place for World Lymphedema Day 2021!

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…

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VASCERN Spotlights: Elena De Moya Rubio

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…

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Videos made for Rare Disease Day

Rare Disease Day 2021 took place on February 28th, 2021. The main objective of this international event is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Our coordinator, Professor Guillaume Jondeau, released a video entitled “VASCERN supports Rare Disease Day!” which talks about the importance…

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VASCA WG CPMS case discussions continue

The Vascular Anomalies Working Group (VASCA WG) continue to have dedicated CPMS meetings where they discuss a complex clinical case every month. This month six of VASCA WG’s healthcare professionals from Italy, Belgium, the Netherlands, Finland and Germany discussed the complex case of a German patient. We thank them for…

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Research News: VASCA Retrospective Study on Severe adverse events during sirolimus “off-label” therapy for Vascular Anomalies

A new article entitled Severe adverse events during sirolimus “off-label” therapy for vascular anomalies has just been published in the journal Pediatric Blood & Cancer. It is co-authored by Vascular Anomalies Working Group (VASCA WG) members Dr. Jochen Rössler, Dr. Andrea Diociaiuti, Dr. Maya El Hachem and Dr. Friedrich Kapp. Access the…

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VASCERN’s 1st Patient Organisations Meet & Greet

The 1st VASCERN Patient Organisations’ Meet & Greet took place on January 29th, 2021 from 6:30-8pm. This event, hosted by Eurordis, gathered patient advocates and representatives from patient organisations already members of the VASCERN European Patient Advocacy Group (ePAG) as well as other interested representatives from patient organisations and delegates of…

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