Research News: A VASCA WG study on efficacy of sirolimus in patients requiring tracheostomy for life-threatening lymphatic malformations of the head and neck

A new publication entitled Efficacy of Sirolimus in Patients Requiring Tracheostomy for Life-Threatening Lymphatic Malformation of the Head and Neck: A Report From the European Reference Network has just been published in Frontiers in Pediatrics. It is co-authored by members of the Vascular Anomalies Working Group (VASCA WG) and presents…

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Guest case from Portugal discussed in the CPMS

After a well deserved summer break, members of the Vascular Anomalies Working Group (VASCA WG) were back on the Clinical Patient Management System (CPMS) last week to discuss a new guest case from Portugal. The virtual consultation panel included healthcare professionals from Belgium, The Netherlands, Finland, Germany and Spain. The…

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VASCERN Registries project update

The VASCERN Registries Project officially launched on May 1st, 2020 and since then much work has been done by our Registry Working Group, the Registry Technical Teams Working Group and all of our members. As a reminder, our registry project can be viewed as either a unique registry, with the…

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Recording of VASCERN Webinar: On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what’s in a name? now available!

The VASCERN webinar on the topic of “On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what’s in a name?“ took place on June 30th, 2021. This informative webinar was presented by Professor Fransiska Malfait, Medium-Sized Arteries Working Group (MSA WG) Co-Chair, from Ghent University Hospital in Belgium. It started with…

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Focus on World HHT Day!

June was Hereditary Haemorrhagic Telangiectasia (HHT) Awareness month and June 23rd was World HHT Day! This international event was a day to raise awareness for this rare inherited disorder of the blood vessels that is covered by VASCERN’s HHT WG. The HHT patient advocates and patient organisations of the European…

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