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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VASCERN statements concerning SARS-CoV-2 vaccination

With vaccination programs against SARS-CoV-2 already underway across Europe, VASCERN’s Rare Disease Working Groups have produced individual statements for their patients when it comes to COVID-19 vaccinations. The following statements are now available: Hereditary Haemorrhagic Telangiectasia (HHT) Heritable Thoracic Aortic Diseases (HTAD)  Medium-Sized Arteries (MSA) Working Group – vascular Ehlers-Danlos…

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VASCERN Spotlights: Erik Björck

We are very happy to present our first VASCERN Spotlights article of 2021 featuring Dr. Erik Björck: a clinical geneticist from Stockholm, Sweden and member of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG). Dr. Björck tells us why he enjoys being a clinical geneticist, the challenges of being…

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New VASCERN Pregnancy and Family Planning WG page!

We are happy to announce that VASCERN’s newest transversal working group (WG), the Pregnancy and Family Planning WG, now has a dedicated page on our website. Access the Pregnancy and Family Planning WG page here The group, coordinated by Professor Julie De Backer (Chair), Professor Guillaume Jondeau (Co-Chair) and Petra…

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VASCERN Spotlights: Christina Grabowski

This month we talk to Christina Grabowski, European Patient Advocacy Group (ePAG) Deputy Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group (HHT WG), from Germany.  Christina represents the German HHT Patient Organisation – Morbus Osler Selbsthilfe e. V and gives us her thoughts on the role of a patient…

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