Give blood for the #myHHTvalentine campaign!

Started by the patient organisation HHT Onlus in Italy 5 years ago, the #myHHTvalentine campaign is back this year with the aim to raise awareness for Hereditary Haemorrhagic Telangiectasia (HHT) by encouraging blood donations from February 1st until Valentine’s Day (February 14th). HHT is an inherited disease of the blood…

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Research News: New collaborative publication from HHT-WG on safety of thalidomide and bevacizumab

A new collaborative publication by the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) entitled Safety of thalidomide and bevacizumab in patients with hereditary hemorrhagic telangiectasia has been published in the Orphanet Journal of Rare Diseases. It is co-authored by Prof Elisabetta Buscarini (HHT-WG Deputy Co-Chair), Dr. Luisa Maria Botella, Prof. Urban…

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VASCERN Spotlights: Lise Murphy

VASCERN Spotlights: Lise Murphy “What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to the European Reference Networks. I have appreciated this attitude a lot. I was also really impressed by the other patient advocates…

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VASCERN App officially launched!

We are happy to announce that VASCERN App, the free mobile application for IOS & Android created by VASCERN, is now officially launched and available for download at both the Play Store and Apple store.   Download the VASCERN App for Android at the Google Store here Download the VASCERN…

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Research News: New collaborative HTAD-WG publication

A new collaborative research paper entitled SMAD3 pathogenic variants: risk for thoracic aortic disease and associated complications from the Montalcino Aortic Consortium has just been published in the Journal of Medical Genetics.  It is co-authored by members of the VASCERN Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) including Prof. Julie De Backer (Chair…

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New Video Presenting VASCERN released!

We are very excited to finally share our brand new 5-minute video with you entitled How can VASCERN help you? Link to the video here This video presents VASCERN, its members and the work that our network does to improve the lives of patients with rare vascular diseases. It is…

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Final report from 4th Conference on ERNs available

The full conference report of the 4th conference on European Reference Networks (that took place November 21-22nd, 2018 in Brussels, Belgium) has been released by the European Commission. This comprehensive report outlines the main topics discussed during the 5 round table and 8 parallel sessions that took place during the two day…

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